Stephanie Kukora, MD (Host): Welcome to the Pediatric Ethics Podcast Series, sponsored by the Children's Mercy Bioethics Center at Children's Mercy, Kansas City.

I'm your host, Stephanie Kukora, a Bioethicist and Neonatologist here at Children's Mercy, and today I'm speaking with Dr. Beatrice Lechner. Dr. Lechner is a Neonatologist, the Director of Palliative Care at Brown University, and the Chair of the Ethics Committee at Women's and Infants Hospital. She completed pediatric residency at Yale University Bridgeport Hospital and Neonatal Perinatal Medicine Fellowship at Brown University Women's and Infants Hospital.

She's also a graduate of our certificate program in Pediatric Bioethics at Children's Mercy in 2023. And today, will be talking with us about her project from the course, which was recently published in the Journal of Perinatology, entitled Equity, Inclusion, and Cultural Humility, Contemporizing the Neonatal Intensive Care Unit Family Centered Care Model.

Thank you so much for speaking with us today.

Beatrice Lechner, MD: Thank you. I'm happy to be here.

Host: I was hoping you could start out by talking a little about the stress of the NICU environment on families. I'm always talking about how our population of patients and parents in the NICU is really unique to medicine. How would you say that this impacts the relationship between the care team and the newborns and their families in the NICU setting?

Beatrice Lechner, MD: Well, as you say Stephanie, being in the NICU is incredibly stressful for parents, and I would describe it as really being the perfect storm of stress for families. There are so many different layers to why it's such a uniquely difficult situation for families. So one thing is that there's a significant life event that just happened to this family, that a new child was born, either their first child or an additional child in this family.

And then now they're trying to parent a child who they're just getting to know and this baby is sick, is in the NICU. That's all challenging. And then in addition to that, the mother is also going through her own medical issues, even if it was just an uncomplicated delivery. Even then, she's just given birth to a baby.

So there are lots of physical changes, psychological, emotional things that the mother is going through herself. And then the other part is that society expects that a birth is something that's happy. It's supposed to be one of the happiest moments of your life. You know, if you look at social media or on TV, there's a lot of hype about having a baby and how wonderful that is, and everybody's always so excited.

So it's not something where families are expecting something frightening to happen and for that baby to be sick or in worst case, you know, to be fighting for their life, they're expecting the perfect birth. And so, they're grieving that. And at the same time, they're worried about their baby. At the same time, they have their own health issues. So it's really a perfect storm of stress. And so how this impacts their relationship with the care team is that this isn't sort of an otherwise happy, healthy, well adjusted family who's there supporting their loved one in the hospital, but it's really, they need a lot of support themselves because they're going through their own crisis in addition to the baby's health.

Host: Yeah, I think, what you're saying about birth really being presented as this, like, happy event and feeling really kind of confused by it if your birth experience was challenging traumatic is a, really important point. I had a little bit of a challenge, with my own complications when my daughter was born.

And I felt like it was really hard to reconcile that with everybody else's story of, like, the best day of my life was when my child was born. And I was like, Oh. That was a scary day for me, like I felt like I was close to dying. But yeah, no, I think really important points. So I know that in the early days of neonatology, parents were mostly excluded from much of their infant's care, but this started to take a turn in the 1990s with the introduction of family centered care.

Could you tell us a bit about how that change came about and what the goals of family centered care are?

Beatrice Lechner, MD: So it wasn't just even that parents were excluded from their infant's care, but they were very physically excluded from the NICU decades ago. So they couldn't be in the NICU. It was considered to be a problem in terms of infection control. And the thought was that there's nothing that they can contribute to their baby being in the NICU.

So what started changing was as there developed more of a focus on developmentally appropriate care for babies in the NICU, it became clear that the parents have a role in that. And, I think we started to recognize that parents are really an important part of developmentally appropriate care for their babies.

And so that's how family centered care started to develop. And really there are a couple of goals to family centered care. One of the sort of main stated goals is providing good communication between the care team and the parents so that they feel that they know what is going on with their baby and that this communication and just how the family is treated and, and vice versa, is based on dignity and on respect.

And then specifically, a lot of the respect is focused on the parents right to make medical decisions for their baby. So there was sort of this shift away from paternalistic medicine that we had seen, not just in neonatology, but really everywhere, in medicine, up till this point. So the point of family centered care was really to encourage parents to be there in the NICU.

It was to provide care in a compassionate manner. Providing adequate pain control, interestingly, was also a part of the development of family centered care, because before this time, the thought was that premature babies didn't experience pain. That's sort of a whole other topic and podcast onto itself.

But then after the development of the first family centered care models, sort of the next iteration was family integrated care. And the subtle difference there was that parents were no longer just welcome to come into the NICU and to spend time with their baby, but they were considered a part of the medical team.

So hence, integrated care model, that the family was integrated into helping to take care of the baby. And the thought was that they actually play an important role. So they're just not accepted as a guest, but they have a real role on the team taking care of their baby. And then the most recent further iteration and further sort of building block that was added to the family centered care model was trauma informed care.

As we started to understand, not just in neonatology, but more so initially in adult medicine, that so many families, not only is being in the hospital and whatever is currently going on, traumatic to the families, but that many families bring trauma, possibly unrelated to healthcare or related to a different healthcare experience, into the current situation and that they're dealing with all of that at the same time.

So that was sort of in a nutshell, what trauma informed care added, that we need to be aware of the fact that families might be bringing trauma into the NICU and that we have to support them, in that manner.

Host: I hadn't really realized that pain control in newborns was not really considered a big thing until family centered care came around because 1960 was when neonatology was first recognized as a specialty and I think for decades there, we were just kind of assuming that babies didn't feel pain feels very strange looking at it retrospectively.

Beatrice Lechner, MD: Absolutely. There are some components to that, that, I know early on, and I, don't know the exact years, but early on there were surgical procedures performed on premature babies without any, anesthesia and those sorts of things. So yes, as I said, that's a whole interesting topic onto itself.

Host: Oh my gosh, wow. All right, so the family centered care and the family integrated care and the trauma informed care models helped us move forward considerably in neonatology, but there are still gaps in this framework that seem to have become more pronounced, as time progressed and we better understood some of the psychosocial and relational aspects of medicine better.

In what areas do you see gaps and opportunities for improvement in the family care family centered care and other models that you just discussed.

Beatrice Lechner, MD: So really the main, I'd say big gap that the current family centered care model exhibits is, when you look at the experience of families who face additional challenges in the NICU of race and ethnicity based outcome disparities. And so some of these families, given these disparities that we are aware of, may not trust the system and their caregivers as much as would be ideal therapeutically speaking, or if it's not a question of trust, they may just not fully feel welcome and feel supported by their care team.

So it's really in the areas of diversity and inclusion and providing care with cultural humility that current family centered care model or that traditional model is lacking.

Host: So in the paper, you suggest, contemporizing our framework to be equitable, compassionate, family centered care, and incorporating knowledge of self-reflective practice around collaborative compassionate care, trauma informed care, and cultural humility. So I'd love if you could explain for us a little bit how these components build on the existing models that we practice in the NICU and how it will impact the care that we give.

Beatrice Lechner, MD: What we want to achieve with these things is to not assume the way the previous models assume that parents don't have barriers to being present in the NICU, that they don't have language barriers, that they completely trust the healthcare system. And so, to do this, what, knowledge of self means is not just you're focusing on the patient and learning more about them, but really understanding ourselves and how we're approaching the care of various families in the NICU. And then using that the knowledge, both of the patient, but also knowledge of ourselves, of our values, of our experiences, to reflect on what we do and what reflective practice is, is it's sort of interweaving, the knowledge that we gain, by learning, with the experiences that we have in the NICU as we're working and really reflect on those.

And ideally what this achieves is that we start to be able to identify our unconscious biases that we all have. Everyone has them. And the more that we are able to self-reflect and understand where our biases are coming from, the better we will be at moving towards treating patients in a manner that is not based on our unconscious biases.

And then the other component of that is to practice with cultural humility. And what cultural humility is, what's really important here is that it's very different from the expression, cultural competence. When we say cultural competence, while that is an important concept and it refers to understanding certain things about certain groups, whether it's religious groups or groups from certain countries; if we sort of stick with just cultural competence, then there's the risk that we start stereotyping people and saying, Oh, you know, I know where you're from, or I know what your religion is, hence I know, what you're going to want from me.

And what cultural humility does is it takes this a step further so that we're able to really be open to asking families what it is that they would like from us based on all the background that we're aware of and based on what they are telling us because each individual family is so different from the next one that there's no way of actually being, quote, competent in knowing what sort of psychosocial support they need from us.

Host: Are you able to give an example of a time that you've seen either unconscious bias or lack of cultural humility impact care of a patient in the NICU to kind of illustrate that a little bit better for us?

Beatrice Lechner, MD: One thing that just immediately comes to mind is something actually from a very long time ago. I was still a trainee, and I don't remember exactly the specifics of the case, but what I remember is that a nurse who was otherwise you know, a lovely, caring nurse, said something about whatever it was that this family wanted to do.

And I have no idea what it was. I don't think it was anything very different from what we usually saw with parents. But this nurse's response was, we don't do that in America. And I remember feeling so uncomfortable with that and thinking, first of all, just because we don't, who says that we're sort of the norm and things should be done the way we, quote unquote, do it in America.

But then I also remember thinking, well, there are millions and millions and millions of people in America, each one of us is so different from the next person. Like, how can we even say, you we in America do something a certain way when there are so many different people? So I think, I was, on a certain level, always interested in, how we treat families, who are all so different from each other and what each family needs. So I think that's why, even though this was decades ago, that little comment just stuck with me as a, hmm, maybe we shouldn't say things like that, or maybe we shouldn't be thinking things like that.

Host: Yeah, I know that actually reminded me of, a time in medical school when an OB brought for our, sort of early, maybe it was like first year, a placenta. And there was some discussion if she had actually gotten permission to take this placenta and show it to the class, cause I was like, it's sort of weird that you could like bring this, organ, essentially, in.

And there was some sort of snide comments about well, we don't necessarily ask about it. And, you know, some of these people, like, they want to take it with them and so gross, what if they eat it, you know? And I was like, well, did you ask them? And if they want their placenta, I don't feel like that's our position to judge why. If it's safe to give it to them, then you should. It was very interesting, but it was a good thing we took this placenta away because Lord only knows what they would have done with it. And I was like, oh, that's an interesting, way to do it.

So yeah, I think, there are for sure situations where people are kind of making judgments about what other people might do or what their practices are and that they're wrong or weird and misunderstood for sure. So what do you anticipate the impact would be of including some of these more contemporary components in the family centered care model in the NICU?

Beatrice Lechner, MD: Ideally, it will help us as individual care providers to identify our own biases, so that we can actively work towards them, not dictating how we provide care. And I think the more self aware we are, the better the care is that we provide. And then similarly, in terms of cultural humility, being open minded, being curious about the family, asking them how they need to be supported, and then really what this all leads to is that if we're providing, compassionate and culturally humble family centered care, then our patients will trust us more.

And if they trust us more sort of in a positive feedback loop, then we will be able to provide better, family centered care to them. And it's just sort of a, a nice, feedback loop that, more trust leads to better care, better care leads to more trust. So that's really the thought behind providing culturally humble, family centered care and acknowledging the vast, inequities that we see in NICU care in the literature and trying to address that at the individual level.

Host: So I feel like it's always easy to say, well, we should be practicing differently. We should do this better than we're doing it. But I feel like it's actually like much harder to figure out how to implement this in real practice. Like what, specific change can I do myself or what can my institution do and things like that.

So I wondered if you could talk a little bit about what advocates for equitable, compassionate, family centered care can do as individual clinicians, researchers in the field, healthcare institutions, like what can my unit do, what can my hospital do, or even national organizations like the AAP.

What do you see being the ways to impact and affect this change?

Beatrice Lechner, MD: There are many things that we can do at all of these levels. So I'll start with researchers. It's really, important to do research in this area and to see what would be useful and impactful. And what's really important about that is to encourage our patients to be equal partners in this research, basically to do, community outreach and to have community engaged research, because there's only so much that we can do without our patients telling us what it is that they actually need. So, getting back to the whole concept of cultural humility. If we're not open to the feedback of what it is that we're doing right or wrong, then it's hard to come up with plans. So we shouldn't be coming up with ideas on what to do on our own, but really research should be a partnership with our patients.

So that, I think from the research perspective, that's what we should be doing. In terms of health care providers at the individual level, whether it's attending physicians in the NICU, nurses, respiratory therapists, whoever else works in the NICU; it's really to embrace that self reflection to work on our unconscious bias.

And I know it's hard, and I know many people struggle with that sense of, no, no, I'm not biased, I don't have bias. I think what's so important is to realize that it's not, a terrible label. It's something that's just very, very human. And we all have biases just based on what we've been exposed to during our lifetimes, what our experiences are, who we are as human beings.

And so if we realize that and embrace self reflection as a way to tease out what are the things where we are not providing ideal care, that is really, really useful. And then also seeking education in cultural humility is, definitely important. What I personally always find so meaningful is when either I read an article that was written by a parent from their perspective, or, seeing a panel discussion where parents provide feedback.

I feel like I learn an incredible amount each time. And it's, it's very, very humbling, but incredibly useful. And there are so many little tidbits that I've learned from parents over the years. So I think as individual providers, those are the types of things we can do. I think in terms of individual healthcare institutions, we can prioritize evidence based staff education.

So educating our staff on unconscious bias, on cultural humility, on how to take care of families and provide psychosocial support to the broad variety of patients who we have the privilege to take care of. And then in addition to that, providing really good interpreter services, I think, is a very big one, and it's really hard to do that, and I'm currently engaged in some research looking at this. Many hospitals don't have what's ideal, which is having an in person, highly trained interpreter, present 24 hours a day, when families need them.

So that would be something that healthcare institutions can work towards. And then at the national organization level, so this is, I think a big one, aligning research funding, and sort of the structures of research funding to support research in these areas is incredibly important, and think we're lacking a little bit in that area, and then, developing policies in terms of health insurance and what health insurance companies reimburse.

So for example, what I was just talking about at the healthcare institution level, services that are appropriate, in terms of having interpreters present who are highly trained and who are in person and right there, 24 hours a day, obviously that costs money. So that's something that should be seen as just as important as paying for the antibiotics that the patient needs, because they need their interpreters for their outcomes to improve. So it sounds, a little bit odd, but I think there's enough data out there at this point that we know that to be true. And so I think having insurance companies pay for that as a healthcare intervention would be incredibly important.

And then really developing and then disseminating education or opportunities on health equity, via professional organizations. Having that be something that's really important and that is, easily accessible to professionals, whether it's physicians or nurses or other healthcare professionals who work in the NICU would also be very important at that national level. And I think if we do all of these things at different levels, I think we can really make a lot of progress in providing more equitable care and more equitable outcomes our patient population in the NICU.

Host: I love these and want to highlight that I agree that parent voices are so important on the individual level and really helping us understand this experience from their perspective and from their experience and from their lives. I mean, this is such a huge impact on them.

I agree with you too about the interpreter services piece. I feel like that's not done as well as it could be. And there's a lot of barriers to helping that be effective. And then on the national level, I couldn't agree more that funding should be directed more in this field, in part as a researcher myself who, wants to do work in this field, and I'm, struggling a little bit, and I think, Beatrice, you and I have chatted about this before, that it is really challenging to want to study some of these really important aspects of care that aren't maybe viewed in the same light as, pathophysiologic diseases or treatments, even though they have probably equivalent impacts on neonatal outcomes.

Beatrice Lechner, MD: Yes they absolutely do. In fact really think this is the low lying fruit because providing compassionate care, providing interpreters, being there for families, having families feel like they have advocates in the NICU who look like them. All of these things are so much less expensive than coming up with the newest, coolest ventilator or whatever it is that we otherwise do or that money is spent on.

 I really think that some of the outcome improvements would be so much easier to achieve some of those things. It's just a question of putting the funding in the right spot.

Host: Absolutely. Well, I just want to say thank you again so much for joining us on this podcast. For those listening, please check out Dr. Beatrice Lechner's paper on this topic. It just was released in the Journal of Perinatology, I think this month I saw it come out on paper. And of course, for those listening, please join us for future podcasts in the Pediatric Ethics Podcast series sponsored by the Children's Mercy Bioethics Center at Children's Mercy Kansas City.

Thank you again.