Intro: Welcome to the Peds Ethics Podcast, where we talk to leaders in pediatric bioethics about a hot topic or current controversy. And now here's your faculty host from the Children's Mercy Bioethics Center in Kansas City.

Jeremy Garrett, PhD: Hello and welcome to another edition of the Pediatric Ethics Podcast, sponsored by the Children's Mercy Bioethics Center. My name is Jeremy Garrett. Today I'm thrilled to announce a new partnership that the podcast is undertaking with the Journal of Pediatric Ethics. We'll be featuring interviews with authors of recently published articles in the journal, providing extended discussion and clarification of their themes and digging further into the concepts, arguments, and cases they address.

I'm happy to be joined here by Dr. Ian Wolfe, Senior Clinical Ethicist at Children's Minnesota and the editor of the Journal of Pediatric Ethics. Ian, thanks for being here.  

Ian Wolfe, PhD, MA, RN, HEC-C: Thanks for having me Jeremy.

Host: Could you please tell our audience a little more about the journal, its history, its aims, and what your vision for the journal looks like moving forward?

Ian Wolfe, PhD, MA, RN, HEC-C: The Journal of Pediatric Ethics was founded out of Children's Minnesota by Dr. Nneka Sederstrom, the first issue coming out in 2017. Our second issue of volume three will be coming out in spring 2024. The journal aims to provide good research and discussion and case review in pediatric ethics. It is the only in print journal of pediatric ethics, and our goal is to provide practical guidance and ethical analysis and recommendations and cases for pediatric clinicians. We also provide narrative reviews, narrative accounts, and a family voice section that was really beneficial in providing, family voices and perspectives and narratives for pediatric ethics literature.

Host: That's terrific, and we are truly excited about the collaboration together moving forward. We're going to be kicking off the series today with an article from the most recent issue of the journal, which is Volume 3, Issue 1. And it just happens to be an article that I co-authored, so I'm going to now flip my duties from host to interviewee and allow you to introduce the first author and ask us some questions about the article we published.

Ian Wolfe, PhD, MA, RN, HEC-C: THanks, Jeremy. I'm happy to be here today to talk about one of the feature articles in Volume 3, Number 1 of the Journal of Pediatric Ethics, which came out this fall. The title of the article is Disagreement and Ethical Decision Making in Pediatric Emergency Care. And we have both authors, but we'll be talking to the first author, Dr. Joseph Shapiro, who co-authored this with you, Dr. Garrett. Dr. Joseph Shapiro is a Pediatric Emergency Medicine Specialist and Clinical Ethicist. He completed a certificate in Pediatric Bioethics at Children's Mercy, Kansas City, and holds the HEC-C credential from the American Society of Bioethics and Humanities, and currently sits on the Ethics Committee at Boston Medical Center and Children's National Hospital. His academic focus is on conflict resolution in acute care settings and ethical issues in child maltreatment evaluation. Welcome, Dr. Shapiro.

Joseph Shapiro, MD, HEC-C: Hi, thank you for having me. I really appreciate it.

Ian Wolfe, PhD, MA, RN, HEC-C: So, Dr. Shapiro, this is a really interesting article. So, Disagreement in Ethical Decision Making in Pediatric Emergency Care, I wonder if you could tell me what prompted your thinking on this concept of decision making, specifically in pediatric emergency medicine, um, as opposed to, in general, decision making in pediatric medicine.

Joseph Shapiro, MD, HEC-C: I appreciate you taking an interest in the article. Honestly, mostly first hand experience. I practice and teach in pediatric emergency rooms. And my experience has been that unfortunately conflict or at least disagreement is somewhat unavoidable feature of this environment. And so I've witnessed or been involved in a variety of disagreements in the ED, and I have thought about how some of our well established ethical frameworks and guidance, which are commonly applied in settings like the ICU, could be applied in this somewhat unique context. And it led Jeremy and I to talk about this topic. So in our discussion we focus on disagreements between clinicians and parents or other surrogate decision makers about recommended plans of care. And really kind of keying in on when these surrogate decision makers decline recommended tests, treatments, or interventions, how the clinician should go about managing that disagreement.

Ian Wolfe, PhD, MA, RN, HEC-C: Yeah, really interesting. I think that comes up a lot, especially when we look at our normal guides and limits we have in decision making, or at least the standard concepts we can all, go to in the basic sort of bioethics and pediatrics, right, which is the best interest standard and the harm principle. Can you tell me a little bit, you know, in your paper, you say that the best interest principle might be inappropriate for the pediatric emergency medicine context. Can you tell us why you think that?

Joseph Shapiro, MD, HEC-C: So, obviously there's a good deal of back and forth about the best interest standard in pediatric bioethics, and we're not really presenting here like a formal critique of the BIS, as a whole. I think, rather, we're thinking about the ways in which it either performs well or performs poorly within this very specific clinical context. And what we discuss in the paper is this idea that to really execute the BIS as intended, it requires a kind of rapport building process where everyone tries to understand family values, medical best interests, and balances out a very careful analysis of what works best for the child and the family. And because of some of the unique features of emergency care, it being time limited, the interactions being one off; it becomes very difficult to give a appropriate application of the BIS, and we were looking for something that we thought might be more practical or usable for clinicians in this setting.

Ian Wolfe, PhD, MA, RN, HEC-C: Interesting. Yeah. In my experience in practice, it seems that we often default to the harm principle more often, within emergency medicine, as you say, I think because of the time constraints. And you mentioned some of this in the article. And so the harm principle is generally thought of as a limiting principle or one that we sort of go to as our default backstop in decision making.

But you talk about that in the paper in a little bit different way. Why is the harm principle not sufficient on its own for pediatric emergency medicine decision making?

Joseph Shapiro, MD, HEC-C: The harm principle or the concept that parental decisions should be accepted unless those decisions place the child at a significant risk of imminent serious harm, I think is actually a great concept for clinicians to understand and apply. But, we delineate between guidance principles and intervention principles.

And the harm principle, as we understand it, is really, only an intervention principle. I think it holds up very well as an intervention principle in the emergency context. We talk about this a little bit, the concept that harm can be indeterminate, it can be disagreed upon, but as the scope of available interventions and courses of action narrows, it kind of becomes more sensical to categorize outcomes as either good or bad. Either creating a significant risk of serious or imminent harm or not. So it's very easy to apply. But in the emergency room, we are really looking for something that was broader and more aspirational. We don't want to just tell clinicians or help clinicians understand when to invoke state intervention or override parental autonomy, but rather how to manage the entire interaction from beginning to end.

Ian Wolfe, PhD, MA, RN, HEC-C: Really interesting, and that's something that I think we've talked about for a while, that the limiting decision making to only the aspiration of the best interest principle, as you say, brings in a lot of subjective value that you need to build relationship with, but leaving it only to the harm principle; also limits the rich in between of decision making and reducing everything to, like you say, either good or harmful, without any in between. And so you, and Dr. Garrett bring up a different standard within your article to bring to the table for emergency medicine decision making. Can you tell me about the reasonable interest standard?

Joseph Shapiro, MD, HEC-C: The reasonable interest standard is an idea, it's put forth by ethicist Micah Hester, and it's a three criteria framework for decision making in pediatrics, or pediatric bioethics. I really like it. I think he lays it out as saying that decision making should be one, aspirational. Which is to say that we start out aiming for best interests in every way possible. Second, decision making should be pragmatic. It should recognize context, differences of opinion, limitations. And then three, it should be constrained by a threshold for intervention, which could be the harm principle. And when we think about this standard in the pediatric emergency room, we have applied it somewhat sequentially.

So, every interaction starts from this aspirational place. Providers make a clinical assessment, they propose what they believe is in the child's best interest. Then, as much as possible, there is a time, space created for parents to modify this medical best interest decision to account for their family's unique circumstances, values. Ideally, this modification process is dynamic, it's consensus building with the medical team. And sometimes there will be a lot of time for this, a lot of space, but sometimes, as is the case in emergency rooms, there will be very little. And so if that modification or consensus building process falls short, the clinician then defaults to invoking the harm principle or, their version of the harm principle to decide about whether there is a significant risk of imminent serious harm to the child and whether state intervention might be necessary.

Ian Wolfe, PhD, MA, RN, HEC-C: And I think your cases really highlight and it brings a level of nuance to some of these situations where maybe you would agree or disagree where some clinicians would immediately invoke the harm principle for what is probably better described, I think you said it earlier, which is the term I like, suboptimal. Not ideal, but maybe not necessarily harmful given all the nuance in there. And as a pragmatist myself, I do really like that and providing better process. Can you discuss an example where the reasonable interest standard provides better support for pediatric medicine clinicians? You kind of did, and maybe we look to one of the cases that you brought up in the article.

Joseph Shapiro, MD, HEC-C: Sure, I'd be happy to. I think, maybe the best way is to kind of just talk through a case and how I think a clinician might navigate that case if the reasonable interest standard is their guiding framework or principle. So in the paper, we talk about a four year old girl, who we call Layla, who comes to the emergency room for treatment of an asthma exacerbation.

And after kind of the initial interventions and then serial examination, it's decided that she probably requires two, maybe every three hour, albuterol treatments for some ongoing wheezing, and subjective shortness of breath, but not respiratory distress. And so in a case like this, I think most people would agree that the guidelines say this patient should be admitted to the hospital. If children require albuterol more than every four hours, we typically admit them. We think of this as a lot for parents to administer at home and being indicative that there is at least some risk that they'll require even more frequent intervention sometime in the future. In this case, the doctor or the clinician would give this recommendation to Layla's parent, mother. She objects. And the reasons that she gives is that she has another child at home, who she needs to supervise. She doesn't have overnight childcare and she thinks it would be too traumatic for her four year old daughter to stay in the hospital alone. She expresses she's comfortable giving albuterol treatments every two hours, and she seems to have a good idea of what the signs and symptoms would be that would, you know, bring her back to the hospital. And so now you're kind of at this point where there's a little bit of an impasse between the mother and the doctor and question is how to move forward.

This is, I will say, a very, very common reason that parents object to hospital admission. They often have another child at home and ED stays are unplanned. So they often have not planned childcare for that second child. And they, as parents do, are weighing the interests of their family as a whole. They're balancing the safety of multiple children, not just considering kind of the medical best interest of the one child. Ideally, the clinician here would try everything they could to help deal with these issues. We could ask the social worker and child life specialists, if they're available, to talk about what kind of companionship and supervision Layla might have in the hospital. We can try and help mom navigate finding other sources of supervision at home. We could see if there's any flexibility in hospital visitation policies that might allow a second child into the hospital. And depending on how busy this emergency room is or what kind of hospital it is, much of this could be available or none of it. And if after this process is carried out, we still can't reach consensus, we can't provide any interim or intervening measures, the provider is left to weigh the likelihood that some type of serious or imminent harm is going to befall Layla. And I think in this case, and clinical severity in all cases is debatable, but I think most clinicians would agree that there's a feasible, reasonable alternative, at home albuterol treatments, close PCP follow up, and so some type of more dramatic intervention would really not be justified. And so I think that's kind of how I would think through this case from like a reasonable interest standard perspective.

Ian Wolfe, PhD, MA, RN, HEC-C: Yeah, thank you. And one of the reasons I like this article as an editor and our reviewers liked it as well, was, you know, we see an increasing complexity in our patients coming in. We see a decreasing amount of social support and clinicians trying to juggle their particular obligations towards the patient and their, duty to prevent harm, but also trying to provide fair process and justice for families.

And I think there's a real distress these days that comes up especially in emergency medicine, where you're having to make these decisions very quickly. And trying to juggle that balance between obligations to the child and best practice, but also fair process and justice. And this one seems to balance or provide some guidance toward, for clinicians to help balance the harm of calling CPS, which maybe doesn't even have any practical things to offer the family either; but also trying to balance the harms that would come to this family of admitting them while also bringing in the child's particular medical plan of care. And this was really provided that practical guidance that I thought we would really strive to provide here at the journal.

Joseph Shapiro, MD, HEC-C: I think that's a great way of explaining it. You know, there's always going to be kind of a legal standard available to clinicians. There's always going to be a hospital lawyer who can provide that concrete recommendation. But, I think it's important for clinicians to have a broader framework that they can use to feel like they're doing the right thing, the ethical thing for families, rather than just the most legally safe thing. And that doesn't have to be in opposition, but, I think we kind of owe it to our clinicians and hospital systems and families to try and be more broad.

Jeremy Garrett, PhD: If I can get in one point here, as the co-author, I think Joe's done a terrific job of outlining what we were thinking with this paper and hoping to achieve. I want to really emphasize this distinction between medical best interest and what we might call a more holistic best interest, which considers non medical factors, including, as Joe indicated, other siblings that may need care or even older family members that may require care that could be compromised by demanding extended intensive hospitalization regimens.

And, I think what we're really trying to argue is that while there's almost always time to construct a medical best interest, even in the most pressing emergencies, and a well trained emergency medicine doctor is able to formulate what plan needs to happen, what's the next step that we need to take; what we often lose is the ability have the time and the appropriate context for that discussion of wider interests that go beyond just stabilizing a patient and getting their basic functioning within the desired ranges that we want. And, when we have time, which sometimes, in certain pediatric emergency cases, there is more time, and even though it is a one off encounter between a family and a provider; there's maybe enough time to learn a little bit more about the patient and what their larger goals are, and what the larger family context is. There often isn't that time, and we have to, in that, situation, really come back to the pragmatic consideration and be deferring to the family a little bit more within the constraints of the harm principle.

But when we have that time, and this is a point that I would say I've heard Doug Diekema, who's the champion of the harm principle and the original person who really sketched it out; if you have the time, you should take it and you should try to have that larger, richer discussion, but when you don't have that time, it may be medical best interest is the best you can propose, and then you're willing to make some accommodations depending on family context. And as we indicate, we're not proposing that the reasonable interest standard necessarily is the best approach for all of pediatrics, but we think it clearly does better in the emergency context, and we would suggest consideration of it as a broader ethical approach for most of pediatrics, again with the idea that if you have the time for a wider discussion of interests, then you should take that opportunity and have that discussion and try to advocate for the child's wider interests with a family while also acknowledging at the end of the day, there is a zone of parental discretion in which other choices can be made that don't necessarily meet that aspiration.

But I think Joe's done a terrific job of outlining what we were hoping to do with the paper and why we think it's important to consider the unique context of pediatric emergency medicine, which really is different than general pediatrics. And it's really different than adult emergency medicine as well, where obviously we tend to defer to the autonomy of the patient to decide when there's conflicts between providers and the patient.

Ian Wolfe, PhD, MA, RN, HEC-C: Thank you both. This is, I think, a great article that will provide really important guidance to emergency medicine physicians other clinicians a very high stress space, in a higher stress environments, lately as I said, with competing resource issues, both internally and externally to the hospital.

And, I think it's so important that we provide this good decision making to staff, both to help staff, but also help patients navigate these difficult situations as well. I appreciate having the time to publish this article and to have this time to interview. Dr. Shapiro and Dr. Garrett.

Jeremy Garrett, PhD: And I want to close out by thanking Dr. Wolfe for the collaboration that we're undertaking. Again, this is the Journal of Pediatric Ethics, Volume 3, Number 1. Dr. Wolfe, do you want to give a quick plug on where folks can go to find this article and the others you've published in the journal?

Ian Wolfe, PhD, MA, RN, HEC-C: We have a LinkedIn page, just as an easy place to go for social media presence. But we also have the main website, which is at childrensmn.org/about-us/clinical-ethics/journal-pediatric-ethics. If you put it into a Google search, it'll be much easier to find.

There you can find, links to subscribe. You can find our most recent issue and our previous issues. And you can subscribe both in print, and electronic.

Jeremy Garrett, PhD: And not to be discounted, you can submit your own articles. So those of you who are pediatric ethics, Dr. Wolfe would love to receive your manuscripts. Again, they publish a wide variety of articles. It could be an empirical article. It could be normative conceptual analysis. It could be a case review. It could be a narrative. It could be even poetry potentially; whatever you have that relates to pediatric ethics, send it to Dr. Wolfe. It really is a great venue and we're looking forward to collaborating more in the future here with the Pediatric Ethics Podcast. Thank you all for listening.