Daphna Barbeau

Okay, our series continues with the next set of articles. I'm joined by Dr. Ashwini Lakshmanan from the Kaiser Permanente School of Medicine and Dr. Paige Tarian Church from Beth Israel Deaconess Medical Center. Thank you both for joining me. We are talking about something that I think is so critical in the NICU. The overarching theme, I think, is about communication and the way we discuss uncertainty in the NICU. And so we have two articles to discuss. Dr. Church, I'm going to start with yours. It's entitled “NICU Language, Everyday Ethics, and Giving Better News: Optimizing Discussions and Disability with Families.” I love the title. I think I'm going to go out on a ledge here and maybe say something controversial. I think even in the NICU, we are uncomfortable talking about disability. We've had you on the show before to talk about this specifically, but if people haven't heard that episode, why do you think that is? Why do we struggle with that?

Paige Terrien Church, MD

I think, good question, I think it's a combination of things. First of all, I think we want to do a good job. We want to do right by the families, that I'm very confident in. I think at the absolute basis of our medical training, however, it is one that is riddled with this concept that we fix things, that there are diseases and we fix them. And so disability falls into this uncomfortable place because, in many cases, it's not “fixable.” And so there's an inherent discomfort there. I think also with neonatology, there's the discomfort around the fact that we're being asked to talk about a life that we don't have extensive experience in caring for. Many of us did pediatrics training, and we did some time with children who may have lifelong conditions, but it's brief. It might be three years, it might have been a little bit longer, but it isn't where we live.

And so that lack of comfort with being able to be granular and talk about it in functional ways is partly based on our lack of exposure, and yet we are tasked with that. And so then we fall to the literature, and the literature historically has been one that has been riddled by what the children won’t do and what may be “wrong” or “impaired” with them, rather than what we now know parents actually want to hear about, which is what the children will do, and the important behavioral and regulatory abilities that the children will have and to what degree. So I think it's a combination of all of those things that drives the discomfort with those discussions.

Daphna Barbeau

Thank you for that. And I think that's a perfect setup to talk about this case that you give at the beginning of the paper. I'm going to read it verbatim because I think it's important.

The case opens: “Lily is a three-day-old, 24-week infant with a first head ultrasound finding of a large venous infarction on the right. She has been otherwise age-appropriate and her care needs minimal ventilator settings, parenteral nutrition, no signs of sepsis. This is the first pregnancy for her parents. Her delivery was precipitous and the family did not have the opportunity for antenatal counseling prior to delivery. Her parents had been consistently at bedside and had been updated on her progress consistently. At the family update regarding the head ultrasound with the attending and fellow as well as the bedside nurse, the results are conveyed and possible outcomes are reviewed: “We did our first head ultrasound on Lily and it demonstrated a large area of bleeding in her brain. This can be called a grade four bleed and is associated with impairments in life like cerebral palsy, which in this case could be severe. It may also affect her cognitive abilities and we cannot yet be sure of her vision or hearing abilities. Some parents who hear this news choose to redirect care or provide comfort care. Others choose to continue to provide care regardless of what impairments she may encounter.” Lily's parents asked to hold her. They state they have many questions, but for now want to hold their daughter.”

So much to unpack here. I think all the components of the discussion were there, but I think anybody who hears that can feel how potentially overwhelming this is. We're giving information, asking parents to make decisions in the same breath, and like you said, really focused on the negatives of her care in a baby who's otherwise quite stable. What do you think when you hear the case read back?

Paige Terrien Church, MD

I'm like, wow, I should have written so much more. First is, we obviously were limited on what we could put in there for a case, but what we wanted to highlight was that we have, I think, been taught in neonatology that there are essential boxes that need to be checked when we have the discussion about a significant bleed. And we wanted to demonstrate that technically we checked all the boxes.

What I think is missing from that discussion is so much. And frankly, most neonatologists today would not have such a truncated conversation. That being said, I think it was important to recognize that what we are told in the literature is only what children won’t do with these findings—not that most children will walk, that many children, even if they have learning differences, are in a mainstream classroom with learning support.

And most importantly, that regardless of whether or not there's an injury present, the essential things for families are: Will she have friends? Will she have a family that loves her? Will she have the opportunity to do sports? Will she be able to be independent in the future? Nothing about these findings confirm or refute those possibilities. And yet those are not things that we are often made sure that we have in our checkboxes when we do that discussion.

Daphna Barbeau

Yeah, I think the most recent literature, especially with IVH, especially unilateral IVH, is that the outcomes are way better than we once thought. And I think it's really because parents have pushed and said, “I'm not ready to withdraw care; I want to see what happens.” And now we have this breadth of literature about these babies who survived to NICU discharge. Some of them are doing remarkably well, typically developing, and that the spectrum is so wide.

Paige Terrien Church, MD

In many ways, I've seen children who have significant bleeds have a greater degree of function and less need than children who have what my hated reference is “the normal head ultrasound,” because I don't think there is normal. My partner says “normal only exists on a dishwasher cycle.” But many children, I've found, have much more difficulty without an injury than those who have an injury.

Daphna Barbeau

What a great point. I think for us to move into the rest of the paper, you introduce some concepts that I think may be new to people, and I think it's important that we define them. So tell me a little bit about these concepts: microethics and the concept of ableism.

Paige Terrien Church, MD