#356 -🚶‍➡️[Life Course Series] - Are We Saying the Right Words in the NICU?

In this episode, Dr. Daphna Barbeau speaks with Dr. Paige Terrien Church and Dr. Ashwini Lakshmanan about one of the most delicate yet essential aspects of neonatal care: communication. Drawing on their recent articles, the discussion highlights how the words we choose in the NICU profoundly shape families’ experiences, hopes, and perceptions of their child’s future.

Dr. Church addresses the discomfort many clinicians feel when discussing disability, emphasizing how entrenched medical training and ableism can unintentionally bias conversations. She introduces the concepts of microethics—the subtle, everyday interactions between families and providers—and how language choices like “risk” versus “possibility” can dramatically shift tone and meaning. The group explores how framing outcomes around abilities and opportunities, rather than limitations, helps families make sense of uncertainty with dignity and clarity.

Dr. Lakshmanan’s qualitative work brings in the voices of parents, revealing how uncertainty permeates the NICU journey and affects bonding, mental health, and confidence. Together, the guests highlight strategies for building trust, addressing parental guilt, and creating systems of support during the transition from hospital to home.

This episode challenges clinicians to pause, examine their own biases, and recognize language as a tool as powerful as any intervention delivered in the NICU.

Transcript

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
Yeah, so I think what we wanted to drill into in this paper is really pulling together theories from developmental peds and neonatology and trying to weave them together. Macroethics are ethics when we think about big, sweeping care decisions: Are we going to resuscitate at 22 weeks as a system of healthcare? Are we going to resuscitate this 22-week infant? That's different from microethics. Microethics are the literally microscopic or minute-to-minute events that happen between a family and a provider, and the ethical opportunities that are woven into those. So how the room is structured, how the providers assimilate themselves into the room, are they standing, are they sitting, is there a power differential, what words do we use? And that's really what we focused on in our paper—what words do you use as you convey information, because our words can convey a bias.

And that gets to your second question, which is the concept of ableism. Ableism is this perception that there is a human species-specific “normal” or traditional body type, brain type, and that anything outside of that is subpar or below what we think is ideal. There is extensive literature in medicine documenting that in general our medical education and our medical care is significantly impacted and consistently has ableism in it.

Daphna Barbeau
Thank you for clarifying those. I think you both then, for us to round out our discussion, talk about this concept of heuristics: how our brain learns about words, uses words, interprets words, and I think that aligns with the concepts that you introduced. So, Paige, tell us a little bit about what heuristics mean.

Paige Terrien Church, MD
Yeah. I went back to developmental peds because that is the other half of me. I was really interested in understanding how humans learn new words, because that's really what our parents are doing. Humans learn language through what’s called relational frame theory, which describes that the brain is driven to make associations. You can intentionally teach that a word has this meaning, but then - for free! - the brain will automatically find other associations with that word that you don’t teach. For example, if you tell a child that a dog is a cute little picture of a dog, they will also learn that the furry, real-life creature is the spoken word “dog.” That’s implicit, not explicitly taught.

So if you're a parent in the NICU, when we teach them about our words, we have the possibility of introducing bias or associations that we either intend or don’t intend. The purpose of our paper was to point out that as parents are learning this new vocabulary, it's really important that we think about what we say and how we say it. I didn’t even get into some of the vernacular like “failed extubation.” How can you be a failure when you’re only 25 weeks? The extubation was unsuccessful. You are not a failure, you are not setting up this kid to have an F in science. These words are internalized by parents to think that that is associated with their child. We say there’s a “risk” of cerebral palsy, but how can we convey that cerebral palsy is a neutral trait if there’s a risk of it? People with cerebral palsy can be highly successful and people without cerebral palsy may not be successful; CP is not the determinant of success. So we talked about using words that avoid assigning ableist bias that would drive parents to make associations that may not be what they personally embody or embrace. So instead of, “there's a risk of cerebral palsy with this head ultrasound finding,” say “there's a possibility. Some children develop cerebral palsy. Let's talk about what that looks like.” Instead of it being severe, “some children are significantly affected in how they move by cerebral palsy. That may or may not affect how they learn, and let's talk about that” and getting into more of the functional aspects of what this looks like. That way families can then say, hey, that doesn't sound so bad or, actually that sounds really scary and I'm uncomfortable with it and I want to know more or I want to make decisions specific around that. But it's not our ableist bias that's being conveyed, it is letting parents assign their own values.

Daphna Barbeau
I love how you made that small change: from “risk” to “possibility.” It changes the entire tone. You also note that we use big terms that we think the lay public understands, but they don’t. In fact, some NICU professionals may not totally understand what life looks like for a baby with cerebral palsy. I really like these sentences from the paper: “Communication during clinical encounters can cause great harm or healing. And given this tendency, the first words chosen are pivotal.” I was always taught the adage that it’s not what you say, it’s how you say it. But now that I’ve spoken to many NICU parents, I’ve come to learn that they remember exactly what you said. So how can we use that to our advantage?

Paige Terrien Church, MD
Yeah, there is no delete button on that brain. When these parents come into clinic and we have a conversation about cerebral palsy as a more definitive possibility, it's really hard to delete those associations made in the ICU. If I could say one thing—it’s that “risk” doesn’t belong anywhere in our conversations, unless it’s something like “there’s a risk you’ll spill your coffee.” When we’re talking about children and outcomes, we should stick to neutral terms.

I’ve had many years to think about this, and I still have to pause to think about my words. It didn’t come naturally. I had to really think about it and hone my vocabulary. You can still convey gravity without saying “bad news.” You can have “important news” or “family-altering news.” “Good” and “bad” and “normal” and “severe” don’t have any place in our discussion.

Daphna Barbeau
Yeah, that’s right. And you’ve mentioned how we put babies, people, patients into little categories: mild, moderate, severe, or no disability. Tell us about the problems with this type of stratification.

Paige Terrien Church, MD
First of all, for families, it's irrelevant. That’s a huge problem. We’re offering information they don’t find relevant. What we think is an impairment, families don’t. Historically, what we were trained to follow for outcomes is increasingly being questioned. Instead, what they want to know is whether their child will have friendships and whether they will be independent. So there is a push toward outcomes that are relevant to families. Getting rid of these ideas that you can be “impaired” - instead, let’s talk about what your child will do.

Daphna Barbeau
I love that. And that’s life-defining for families. Well, I think that’s the perfect time to introduce our second article, “Uncertainty and the NICU Experience: A Qualitative Evaluation of Family and Provider Perspective.” Ashwini, your team looked to describe how uncertainty and the way we communicate it impacted transition to home, access to resources, and parent mental health. Tell us about the study.

Ashwini Lakshmanan
We wanted to complete a qualitative study asking families, “What was your experience like? Tell us about your time in the NICU. Tell us about your relationship with providers from admission to discharge.” And we were struck by this theme of uncertainty—it wasn’t unexpected, but it was ubiquitous in every single interview. Often with qualitative work, we frame it in theories or concepts. We decided to angle our paper around Mishel’s Theory of Uncertainty. Parents described journeys with unexpected circumstances, changing relationships within their family and with providers. That touched their coping mechanisms and ability to adapt. And everything we say and present to families in this great period of uncertainty, we have the power to deliver that with compassion and with a different frame in how we approach our families.

Daphna Barbeau
I like this quote: “Yesterday you said it was fine, and now today you’re saying it’s not fine, and that doesn’t make any sense.” Parents feel like things are going up and down all the time. We anticipate uncertainty when we admit babies, but what is our role in helping parents anticipate it?

Ashwini Lakshmanan
Our definitions may not match theirs. We put things in the context of pathogenesis and treatment, but what we share may look different than their expectations of parenting and bonding. So our role is being present, being compassionate, and really listening to families about what their journey is like.

Daphna Barbeau
What were some of the major themes?

Ashwini Lakshmanan
We encapsulated the experience—the unpredictable health journey, the clinical team’s role in communication, addressing anxiety and needs that families have. That sets up feelings of guilt and isolation, relationships with their partner and other children, and that affects coping, empowerment, and parenting confidence. A lot of that comes from what we say and how we communicate.

Daphna Barbeau
I was hoping we could highlight how parents carry guilt and blame regarding a NICU admission.

Ashwini Lakshmanan
Yes, a number of participants felt that as things spiraled around them, the world looked so different than expected. One said, “I just felt disappointed in myself. I felt like I couldn’t do anything well and I was failing at everything.” So much of it centers upon their abilities and capabilities, when really it's a whole constellation of issues.

Daphna Barbeau
But it’s not all bad news. What worked well for families?

Ashwini Lakshmanan
We interviewed families and providers about how to address these issues. One theme was addressing social determinants of health in the NICU. Families wanted family-centered communication: they wanted to be present on rounds, to hear our communication, and to have tangible resources like videos or management tools. They also mentioned patient navigators, social media support groups, and the importance of supported transitions from unit to home. Continued support and continuity came up frequently.

Daphna Barbeau
I love that. Any recommendations on how we can better connect families to resources?

Ashwini Lakshmanan
Patient navigation works well - whether that’s a social worker, case worker, or patient navigator - to help connect to developmental and community resources. Online resources can be variable, but providing opportunities and ideas is a good start.

Daphna Barbeau
And I think this circles back to our original discussion. Paige, in your article, you listed concrete recommendations. How can we start to change the culture on some of our deeply held biases or at least change the way we communicate them?

Paige Terrien Church, MD
I think our article focused on introducing disability in a more neutral way. From the moment people become pregnant, they’re inundated with ableist perceptions - “there’s a risk of Down syndrome” - it’s hard to make that neutral. But if we can start to push back on systemic bias and instead say, “There’s a possibility of cerebral palsy with this head ultrasound,” that’s important. When we’re about to give really important information, take a “bias break” as a team. Identify sources of bias, whether around outcomes or the family situation – for example, saying “I have a bias because this parent is single and I think that that will have an effect on their overall ability to parent this child.” Acknowledge that and teach each other how to change.

Divest this discussion around outcomes as a binary phenomenon. Human development is not binary, it’s variable and a spectrum. Words like normal, abnormal, and presence or absence of an impairment are not really what happens in life. Get comfortable with being uncomfortable, talk about what it looks like functionally, and if we don’t have that knowledge, call our follow-up colleagues.

Get away from “risk,” “severe,” “bad,” “poor,” and use words that convey importance without imposing bias. Research also needs to change and needs to measure outcomes that are relevant to families.

Daphna Barbeau
I love that. I’ll close with this quote from Jerome Groopman, who wrote How Doctors Think, The Anatomy of Hope, and The Measure of Our Days: “Language is as vital to the physician’s art as the stethoscope or the scalpel.” I hope everyone will sit with that a little bit. Thank you both for coming on today and for the amazing work that you’ve done and continue to do to bring light to this very important topic.