Dr. Ian Wolfe (Host): Welcome to the Pediatric Ethics Podcast Series sponsored by the Children's Mercy Bioethics Center at Children's Mercy, Kansas City. I am your guest host today, Ian Wolfe. I am the Director of Ethics at Children's Minnesota, and guest hosting today as Editor-in-Chief of the Journal of Pediatric Ethics to interview Stephanie Kukora, a bioethicist and neonatologist at Children's Mercy in Kansas City. Dr. Kukora was one of the authors on an article in Volume 3, Issue 2 of our journal. The title of that article is Parents' Perspectives on Values and Values Conflicts Impacting Shared Decision-Making for Critically Ill Neonates. Welcome, Dr. Kukora.

Dr. Stephanie Kukora: Hi, it's funny being on this side of the podcast, since I'm usually on the other side. It's great. Thank you.

Host: Yeah. Well, thank you so much for your article with your co authors. I, of course, as an ethicist, I think we often love qualitative data, because it's where we get to investigate phenomenon that make us curious and gain us better understanding of a particular phenomenon question. And this one, I think, is very relevant to Ethics and Pediatrics as it's around how we apply values to medical facts. And I love one line in here, "When outcomes are uncertain, professional guidelines recommend that goals of care decisions be made jointly by physicians and parents based on medical information and parents values." But I often find that parents have a hard time sometimes applying their values to the medical facts. Is that something that interested you in this research project?

Dr. Stephanie Kukora: Yeah, I think that, throughout my career, I've been really interested, obviously, as you know, in neonatal bioethics. I think it's really interesting. And I think what really actually drew me to this field was this idea that parents might feel really differently about things than we as clinicians do. And that we didn't seem to have a lot of insight into it as clinicians. And so, there was actually a case, I think, when I was an intern, of a baby who'd been born, right at the sort of earliest gestational age that we intervened for, and then had a very, very rocky course. And she had a bad infection. And I remember the team talking to the family over and over again, saying, "Don't you think we should redirect? Don't you think that this should be over?" And this family very resolutely said like, "No, thank you. You know, we want to continue." And they were very polite, they were very nice. They brought us brownies and stuff. They were always very happy with our care. But whenever it came up that we definitely thought that this was going to be a bad outcome that they wouldn't want, they were like, "I think you're wrong. We're going to keep going." And this baby survived actually, and ended up following up with me in clinic a few times.

And what was really interesting to me was that her neurologic outcome was really as bad as we had predicted. I mean, she was not meeting any milestones. I remember I was like, "Is there any milestone?" And the parents were like, "She grew a tooth." And I was like, "I don't know that that's really a developmental gain." But she couldn't really roll over and she was blind and she was deaf. But the parents were like, "We love her so much and we are so happy we have her. And I want you to go back and tell everyone in the NICU how happy we are that they did so much care for her, because we are so grateful."

And I remember just not sleeping well that night, wondering about this and just thinking we were right about the prediction for the child, but we were so wrong about the prediction for how the parents were going to do with it. And it made me think a lot about what about parents who maybe didn't have the sort of resoluteness to stop us and say, "Hey, you're wrong about this. This is what we want to do"? And I just wanted to better understand, because I really truly did not understand why these parents would have made this decision and then be happy with it, because I think everyone on the team was feeling like, "Well, they just don't understand" or "They're going to regret this down the road," and that wasn't at all what I saw. So, I wanted to understand better what are we missing as clinicians when we try to think about how parents are making these decisions. So, that really prompted me to kind of go this whole direction with my career. And I had wanted to study this quite a while. And the study started out, we were just going to do a very small pilot. We were only going to talk to three or four families just to see if it was feasible and if they wanted to talk and if there was anything there. And we actually had so many parents want to share their stories that we just interviewed everyone that we had the ability to on our timeline and made it into a bigger study. And I think it was really interesting. I for sure learned a lot.

Host: And you get to one aspect there. And I talked a little bit about how parents apply values to medical facts and, of course, ethicists and mostly probably our Pain and Palliative folks or Palliative Care physicians and practitioners are used to helping families navigate how their values and the medical facts blend together to create goals of care. But I think as you're pointing out, the harder part is how do medical teams understand parents' values as it applies to the medical facts and making sense of that. And as you note here, that sometimes leads to those values, conflicts, either conflict with the parents or internal conflicts in the practitioner's head of how does this make sense.

Dr. Stephanie Kukora: A lot of moral distress around that.

Host: Right. And one thing that struck me in reading this when your team submitted it, and then when it was published is, and this has been coming up a lot, and I've talked to other colleagues who are noticing this trend a little bit more, where we used a go-to phrase or concept that clinicians use, futility or suffering. And over time, that's evolved, and it seems to have evolved and kind of what you brought up is this doesn't seem to be aligning with what we think is good for this child. They must just not understand.

Dr. Stephanie Kukora: Yeah, this idea that they just don't understand is, I think, how we as clinicians think about it, right? And I'm not saying that it's not hard to understand what this means. I think that, especially in situations like periviability counseling, for example, we have lots of statistics about how these kids do, but it's really complicated because these are like population data, and they are very influenced by the situation individually, and it's very hard to make a prediction for one kid. And there are things that factor into how we do these statistics, and things that don't.

So, I think that it is also true that it's hard, and most families also don't have experience with a medically fragile child. And so, we think, well, maybe they just don't understand what we're we're talking about down the road or what it means to have a child who has a tracheostomy or feeding tube or long-term support in that sense. And I think it's true, those are hard concepts to understand. But I think that, for a long time in neonatology research, this focus on parents make decisions that we don't agree with, it's because they fail to understand, was really like the driving force of the research studies.

One of my fellowship projects was looking at a decision aid to help parents understand the risks of extreme prematurity. And while parents did better on the knowledge quiz, it really didn't change their minds, because they already knew what they wanted to do, and that's also prompted me to say, "Well, why is that? How can that be?" And so, I think that it's a sort of-- I don't want to say like easy, but it's a kind of easy thing to say. Well, they're making these weird decisions because they don't understand. And I think that maybe understanding goes both ways and there's problems with how we understand things. And so, statistics aren't the only thing that goes into these decisions, you know, what the chances are of a good outcome. And what you feel is a good outcome might be really, really different based on who you are and what your life experiences are and what your expectations are. So, I think that really we have more to learn about what it means to not understand maybe than sometimes parents do. Not to say we can't be clearer or we can't work with families. I think we have to understand their wide range of values around what outcomes could be and what that would mean for them and for their child going forward.

Host: it's interesting you bring up the understanding thing. And I've been thinking about this as I work with our fetal health team here and patients and parents and the teams around that, with prenatal health teams and prenatal diagnostics. We often know more, but less at the same time, it seems like. And one thing when you were talking that was brought up was the next point that really stuck out to me as I was reading your data and your analysis of the data was that outcome data and chance of survival was important for parents to know, but it didn't change their decisions, at least for population that you studied.

Dr. Stephanie Kukora: Yeah, I thought that this was really interesting and this has been sort of mentioned in the literature before that maybe our expectations of why parents want information is really different. But maybe, when we go in and we say, "Oh, parents are going to really want these statistics, because that will make their decision." What parents want is to say, "Oh, now I have like expectations around what the chances are that this is going to work," which are sort of different things, right? Setting expectations versus making the decisions.

And I think a lot of people really say, "Well, if the statistics are so vast in one direction or another, that should make people's minds up. And if you really understand statistics, you should always make up. And the example that I like to posit with people, and no one can see my face on the podcast, but for those who know me, I wear glasses, and you do too, so perhaps you're in the same boat with me. And I've thought a lot about should I just get the eye surgery? Because it's like annoying to have to wear glasses and sometimes they get foggy when you're working out. And it could be easier to not deal with them. And my colleagues from medical school who became ophthalmologists are like, "Oh my gosh, Stephanie, the risk of you going blind from this surgery is so extraordinarily low. It really doesn't happen. I mean, it does, but so rarely, that shouldn't be a consideration for you." Except for me, going blind over a procedure that I didn't actually need, because, you know, I could just wear glasses, is just not working out with my values. And people might make really different decisions. I mean, lots of people have those surgeries. But if you think about it that way, no amount of risk is acceptable to me, just because that doesn't feel like it would make sense, and I would have a lot of regret if something did happen, even if that was extraordinarily rare.

So, I think, when we sort of say, "Oh, the chances of survival are really low, parents shouldn't choose this," I mean, truly, if what they can't live with is the idea that their kid could have been that one in 10 or one in 100 who did survive and did do well, and they didn't go for it, then it makes no sense not to try. If that's the unlivable outcome, if you don't try, that's always going to be something that haunts them.

Host: You have this sense that this data speaks so importantly to us as clinicians that it's such a logical A plus B equals C step. But then, when parents don't choose that, we instantly go, "Well, what is wrong with you? Why are you not seeing this data the way that we see it?" So, this was a really interesting part of where I don't think a lot of clinicians realize, and this is a human thing, that we feel that we're using data to make this objective judgment, when it's really a value judgment. And I think one of the parents said, of a moment in their care of their child where a surgeon came in and said, "I have kids and I would never do this to my child if I knew I was going to put them through a painful open heart surgery and they were going to die anyways." And it strikes me, one, that somebody would say that. But understanding that that person was probably thinking that this is so logical that we shouldn't do this, instead of looking at it, say, from a values perspective and understanding that maybe that was seen a different way, different understanding.

Dr. Stephanie Kukora: I will tell you, I'm involved in additional qualitative research now. And the things that physicians say to parents to try to guide them in the right direction is astounding sometimes. There's a lot of offered recommendations where they're not really wanted and where they're clearly dissenting to the values that parents have been trying to communicate back to the team.

What I think is really interesting about this is that the values we saw from families, there were sort of different feelings around a lot of these values, but what came up a lot, and as you know from the paper, is that there would be these conflicts where they felt like physicians had their own ideas and values around these things, and were really narrowly focused on what they thought was the right thing, or on specific aspects, like the chance of survival, rather than what it meant to the parents to feel like they were good parents.

And one thing that I think really has stuck with me, that I think a lot about in practice, is that I'll hear offhandedly things like, "Well, these parents continue to want to do everything," or "They're going for the trach, because they don't care about quality of life." and it's so interesting, because what I learned from this study is that all of the parents said quality of life is this really important aspect to me. But they had really different ideas about what quality of life was, and many of them had very different ideas from their team about what a good quality of life was. And I just feel like this is said sort of behind doors, during sign out, "Oh, they're doing everything because they don't care about quality of life." And I just feel like that's so dismissive, that's so interesting to hear that the clinicians just don't believe that they feel that parents are thinking about that, when in fact, parents are thinking very hard about that, and they just came to a different conclusion than a lot of the clinicians did about what was an acceptable quality of life.

And so, I try really hard to be thoughtful about the language that I use, even with my colleagues, away from families, about being judgmental about the decisions that they're making, and also to try to push back a little bit when I hear this kind of language used and say, "Well, what makes you say that they don't think about it? Have they not talked about it? Have you not talked to them about what quality of life means to them and what quality of life they would consider acceptable?" Because I think that it's really easy to sort of brush people off and say, "Oh, they're making these crazy decisions that I don't understand," because they're just wrong or not understanding or confused or whatever. But I think that maybe more curiosity around why are they saying this and can I understand their perspective a little bit better might be helpful.

Host: Yeah. I talk to a lot of parents, and I think that hard point of, and you brought it up, the parental sense of duty, which I know you link to a number of articles, like Chris Feudtner's articles around parental sense of duty and decision-making, and it's sort of competing duties often for parents in that way. You know, what is my sense of duty as a parent? what do I feel that I need to, you know, do for my child, against what quality of life is obtainable, and what I'm doing to my child to get to that potential outcome. And it's this balance between they do care about that. And there's also this other competing perspective of having done enough for your child, right? And I think that comes up in the theme of ensuring all options were tried and really where medical teams often have a hard time couching that language in medical terms, where then parents see clinicians not treating something, or that's the parent's perspective, and wondering why.

And often clinicians, I think, don't have a lot of good medical language to couch the reasons we are, and maybe there is a good reason, but for parents it seems like the team is giving up, and parents are still saying, "Why aren't we checking this? Why aren't you fighting as hard to find out about this as I am?" That came up in one of your themes as well.

Dr. Stephanie Kukora: I feel like that comes up a lot too clinically and is a big, big founder of mistrust, right, is when the parents get this perception that the team has decided that their child either just won't survive or is just sort of not worth these interventions and they feel very discriminated against, and they feel like the team is not helping them and is not doing good things for their child.

I think that if the team's goal is to maybe change the course or the direction, fostering mistrust in parents is certainly not going to help that move forward. So, I know that the palliative care clinicians I work with talk a lot about that we don't say we're stopping or we're giving up or we don't have anything else to do. We just sort of talk about how some options may be more limited now and other ones might be a better path forward. And the initial goals that we had might not be achievable, but we still have other goals and we can try to achieve those. So, I try really hard to think in terms of that language and make sure that they know that their child is still valued and valued as a person, as a child.

The other thing that I think is really interesting about this is that sometimes our feelings will change as the team, because of a time limit or some results that we got or something. And the family doesn't really understand what made us decide. So, a good example of this is you've been on ECMO too long, and now we've sort of given up that you're ever going to decannulate. And then, suddenly, it feels like there's this rush, where we have to make this decision, we have to convince these parents we have to stop. And often, people will say, "Well, because it's too much suffering." And the parents are like, "We've been on this for three weeks. We were suffering exactly the same as we were yesterday. What's different today? What has changed?" And I feel like it's so crushing to sort of be like, "Well, your team has now given up and that's what's changed." And so, just being thoughtful about that and thinking about how confusing that must be to a parent. And probably, we've all had in our heads that like, this is how long our trial is going, but no one's really maybe communicated that to families. And then, all of a sudden, they feel this shift and they just feel like the whole team has made some decision without them. And I imagine that would be extremely, extremely frustrating.

Host: Yeah. The idea of suffering coming up as well. And I try to note to clinicians that all our interventions cause some degree of what one would call suffering. And I don't think we realize that we tolerate a lot of suffering in healthcare for a potential proportional benefit. And we don't have a lot of those, I think, words to note how that changes when we should say maybe we think the proportion of burden to benefit has shifted. And I've had families who have brought up the concern around their child's suffering. And one in particular that was interesting was that she wasn't saying she wanted to stop, but when she brought up the concern around the suffering, the entire team thought she wanted to stop and was concerned about that. And it was really fascinating to talk to her and just get her perspective. And what she was saying is that she's just concerned about balancing benefit and burden with her child and also keeping hope and understanding what she thought she needed to do as a parent. And that came up a lot in your values conflicts.

Dr. Stephanie Kukora: We're very good at telling parents that this is too much suffering for their child. And they'll be like, "But my kid's roommate right here next to them is having exactly the same things, and I don't know why you're very worried about my child's suffering in a way that's very different than this other kid." You know what I mean? And it feels largely that, if we've decided that it's worth it because you're going to have a good outcome at the end is really a thing. But I think that we're not transparent with parents about that, and also think that that wouldn't be something we should tell parents directly either. I think we just need to rethink that, if the degree of suffering is reasonable for any other baby in the unit, the difference in prognosis probably doesn't change whether it's too much suffering for any one baby, although parents might feel that it is. So yeah, I think we just have to be thoughtful about exploring when parents talk about suffering, what they think and what they mean and how we can mitigate that and not sort of using it as this playing card to say, "Oh, don't you think that we should make a different decision now because of the terrible suffering?" Because parents don't really believe us.

Host: Yeah. And speaking of like when parents speak up, one of the things in that sense of parental duty was that advocacy piece that came up. And I think for a qualitative study, 15 participants was pretty good. It was a pretty homogenous demographics, but we can get into that a little bit too. But one of the things I found interesting was parents needing to advocate and then knowing that they've made "a name for themselves" in the units. Can you talk about that a little bit?

Dr. Stephanie Kukora: Yeah. I found that really interesting too, that parents were sort of like, I had to really stand up. I had to advocate. I had to educate myself. I had to make sure the doctors knew who I was and that I was involved because they felt like they were so dismissed. and some of the approaches that parents were taking were really interesting.

I knew someone who knew one of the doctors better or, you know, those sorts of things. And I was kind of like, well, you shouldn't have to feel that way. And it made me feel really bad that they did feel that way, that they had to really push hard to be listened to or that they felt that we would listen to one type of parent or some parent behaviors better than we would listen to others, which probably is true. There probably is a lot of bias in how we interact with families. But it shouldn't be that families have to go these extra miles to prove that they're good parents to us, that we listen and acknowledge their values. That should just be how we make decisions with them every time.

Host: If we have some that are able to speak up like that or they're telling us they feel like they have to speak up like that and be the sort of troublemaker in the unit, what does that say about maybe the parents who can't do that or don't feel that they can do that for whatever reason, whether it's just from their culture, is just not speaking up or whether they feel like they're worried about the consequences of that if they did based on their race or ethnicity or gender, what have you? Or those that do speak up and it's taken and it's not "Oh, what a good advocate you are, it's "You are causing conflict in here and you need to control your behavior," right, and how that might be taken differently.

Dr. Stephanie Kukora: You mentioned the sample, and we did get a lot of diversity in sort of the diagnosis that families faced, which was really interesting because this felt like a lot of the themes were really uniform despite why you were in the NICU. But you are right, most of the people who were participating were mothers, they were all English-speaking because were not able to interview people in other languages, and they were largely white race, and that has part to do with the demographics of the NICU, and also because I think of who chose to follow up and give us this interview. And I've thought about a lot that it is probably a biased sample of people who were similar demographically to their clinicians, and who felt comfortable talking to us and trusted us enough to want to participate and felt good enough about our NICU to chat with us after the fact and be part of this study, and also have socioeconomic status and such that they could participate in an interview. They could take the time and they had the technology or could come in person meet the interviewer.

And so, I think a lot about maybe who we didn't interview and what their experiences were because these families told us so much about how they were treated and how it impacted their trust and the sorts of behaviors that were done to them, how the communication went that were problematic and that were sort of worrisome, and these folks really should have had some of the best experiences in the NICU. They were the folks who probably we weren't racially biased against, that understood us speaking to them without needing translators, who had the means to be there in person, you know, things like that. And yet, they were letting us know that this was not always an easy experience and that they experienced all of these challenges with conflicts with their team. And it just makes me wonder and worry, what about all the people who saw this email and said, "No, thank you" or we're not on the list that the NICU stays in touch with because they wanted nothing to do with us and what's their experience like. So, we for sure need more research looking at some of the folks who were missed, finding a way to bridge any sort of mistrust between folks who had a bad experience from doing and participating in this research going forward.

Host: Yeah, it's certainly safe to assume that if the folks in your study were having some of these challenges, that there's even harder challenges out there for some and definitely an area that needs to be researched more. So, lots of really good data that you analyze pointing out just how we end up in values conflicts.

And of course, one of the focus of Journal of Pediatric Ethics is really providing practical guidance then for clinicians on how can we partner better with families? What do we do with this information in practice? And so, you set up five recommendations for practice based on these findings. And some of them, I find just really helpful and we talk about this a lot in ethics, as I'm sure you do in your ethics practice as well, and really trying to separate out values and medical facts and separating out how to talk about things not in a values language, but in a medical sort of appropriateness, you know, what things. And I always say, I hear clinicians say, "Oh, I set aside my personal values when I come to work." Actually, you should know your personal values because you need to be able to understand when something is coming into your mind as a value personally versus maybe a medical assessment. So, you have these five recommendations. For you, what were some of the big ones here?

Dr. Stephanie Kukora: The biggest one is really understanding your own values and biases and how they influence how you think about things in the NICU. And I will say that I am no master at suppressing my own feelings and values about things. I just try to wait till we get back to the workroom and then like pound my head on the desk and say, "Oh my gosh, these people are so frustrating because I just can't get on the same page with them." And my team has seen me do it and they think it's kind of funny because they're like, "Don't you study this? Isn't this your thing?" And I'm like, "Yeah, but I still get frustrated. I just acknowledge it." and I think about it and I say, "Man, I'm having a really hard time with the decisions these people are making, but, I get why they're doing it. And if there's ongoing trouble with us not being on the same page, it's my responsibility to keep being curious, keep talking to them, and keep trying to build this relationship in a way that's collaborative and moves us forward, even when I'm frustrated and even when I know that this is not a decision I would make myself."

Host: spend a lot of time talking with the NICU staff and just acknowledging and validating to them that, "Hey, this is really hard." This is inherently distressing work, and one of your recommendations here is acknowledge uncertainty and limitations and have humility. Because, again, sometimes when we know more, we actually know quite a bit less than we think and just being comfortable with that uncertainty and being able to communicate that to families.

Dr. Stephanie Kukora: I think that this one sounds like an easy recommendation. Oh, talk about the uncertainty. But in reality, it is really hard and we need to do more to understand about how parents think through uncertainty and what that means to them. Because there's this really interesting balance in actually another paper that we're writing now, where we're finding that the uncertainty will lead space for hope, that's really, really good. But to be able to feel confident in a decision, you need to have more certainty, that it's the right choice and that you don't really have as many other options.

And so, finding this balance, parents really want hope and they really want certainty. And that's really a challenge to sort of satisfy both, because if you're really certain that it's bad, then it's going to be disappointing and it's going to harm the hope. But maybe that gives them reassurance that the path forward is not so bad. And I think that's what makes the most sense. So, thinking about how to balance those things, how to acknowledge those things, how to leave space where there is hope for a good outcome, or that we were wrong or things like that, but not create a lot of false hope that can set up a lot of disappointment.

So, I think just trying to figure out, how do we do that? And so, that's an area of future work. I encourage anyone out there who's interested in a career in neonatal bioethics research to start helping us think about how do parents process this? And what is this relationship between hope and uncertainty and certainty and confidence and decisions?

Host: And I think there's a really good to point out is just how we talk about that uncertainty. And, of course, I don't think you are, and I'm not recommending that clinicians just walk in and go, "Well, we just never really know." That's not the answer either. And there is limits to how we think about things.

And one thing that comes up a lot for me and you mentioned it too, is I hear this phrase, "Well, parents want everything done." And I think parents say that. And it means something different that how our minds interpret that concept, right? Like if I had said that as a parent to you as a neonatologist, your mind might go to jet ventilators, chest tubes, ECMO, these grand technological abilities. And that's not necessarily what they mean, and it doesn't obligate you to do things that are not ethically permissible or not medically appropriate, right? So really, you can have uncertainty and a range of things that are appropriate with limitations on that as well.

Dr. Stephanie Kukora: I actually think that one of the biggest challenges that I'm grappling with now is when parents come in saying, "We've thought hard about our values and we want to do everything." And I go, "Cool, I'm there with you. Let me explain to you what that means medically." and suddenly, they're extremely disappointed to hear how challenging this might really be and how their lives will change and what a good outcome really could be. And I think this sets a lot of expectations, right? Because I think that there is a big pressure to be this good parent, to be this sacrificial parent who does everything for their child. And then, when I start to explain what it might be like for them to have to move to a location where they can have home nursing for a tracheostomy someday, they're like, "Wait a second, what about our farm?" And I'm just like, "Look, you're going to make the decisions you're going to make. I'm committed with you. We want to do everything, we'll do everything. But just so that you know, there are big trade offs with doing everything." And I think that that really actually impacts a lot, their vision of being a good parent and being able to commit to their child in that way. What I show them is that this path of everything is extraordinarily difficult and might not still achieve what they're hoping for their family.

Host: Absolutely. And I think your last recommendation says it all, communicate respectfully with empathy and support parents' hope and their ability to feel that they are being good parents.

Well, Stephanie, thank you so much. For folks listening, you can find this article at the Journal of Pediatric Ethics website off the Children's Minnesota website, which you can probably find easiest by Googling. Just a note that we are currently in the process of moving to open access. So in the future, hopefully this fall, this will be available for download as open access. If not, you can email ethics@childrensmn.org to obtain copy of this. And if you have submissions, you can look at our website and look at the submission criteria and what we are accepting. And we are currently accepting articles for issue two of volume four to come out in spring of 2025.

Dr. Kukora, thanks so much to you and your coauthors for this great, important work in this phenomena. And it sounds like you have some more in the works.

Dr. Stephanie Kukora: Thank you so much for having me and allowing me to share this and get this out. I'm really hopeful that this and work that stems from it can really change how we interact with families and to have more collaborative and trust-promoting relationships that lead to better outcomes for our families.

Host: Well, thank you so much, Dr. Kukora.

Dr. Stephanie Kukora: All right. Thanks.