Is the Best Interest Standard the Best Standard for Pediatric Bioethics

Program announcer

Welcome to the Peds Ethics Podcast, where we talk to leaders in pediatric bioethics about a hot topic or current controversy. Here's your host, John Lantos, from the Children's Mercy Bioethics Center in Kansas City. Hi

Dr. John Lantos

everybody, this is John Lantos from Children's Mercy Hospital Bioethics Center in Kansas City, Missouri, coming to you back again with our Pediatric Ethics Podcast. We are I'm thrilled to have with us today Erica Salter from St. Louis University, where she is the director of PhD programs, an associate professor of healthcare ethics and of pediatrics, and at the Albert Carnegie Center for Healthcare Ethics. Professor Salter has written some of the most insightful articles in bioethics today about the best interest standard. and how it's used in decision-making in pediatrics. So welcome, Erica. It's so nice to have you here.

Erica Salter

Well, thanks, Don. It's a pleasure to be with you today.

Dr. John Lantos

How did you get interested in best interest standard and start thinking about that as something you wanted to write about?

Erica Salter

I got started on the topic really as a graduate student. As I was reading about decision-making in adult populations, I thought maybe these questions would look a little different when we look at the context of pediatric decision-making. And that context really was just fascinating to me because unlike in the adult context when we're dealing primarily with patient and provider, in the pediatric context we're dealing with sort of more of a triad, you know, a triangle of decision makers. There's the provider, the child, and then, of course, the parents and the influence of those sort of... parental decision makers or surrogate decision makers, I think is more obvious in the pediatric context, but of course has some interesting, I think, effects when you look at the adult context as well.

Dr. John Lantos

The history of the best interest standard is fascinating. It wasn't developed for use in clinical ethics consultation. Do you think it fits? Do you think it helps us?

Erica Salter

That's a great question. You know, it's a standard that has received a lot of criticism in recent years by bioethicists and clinicians alike, myself included. If you'd like, we can get into some of those critiques. But I do think that the phrase, the best interest of the child, will always be a part of our common parlance, especially in pediatric medicine. Quite frankly, I just think it's simply too convenient a term. And the rhetorical power that it wields to rally parties around a common cause, I think is, in some instances, irresistible. So for example, even though I'm a kind of a big critic of the best interest standard. When I lead an ethics consult, I often begin with something like, thank you for gathering here today. We're all here because we care about this child and we want to do what's best for her. Of course, the actual content of the consult will probably be negotiating and determining how various people define best and what conflicts arise. But in this context, the best interest of the child is operating, I think, more as a rallying cry and less as a standard of decision-making. So as a standard of decision-making, though, I think there are a lot of critiques that might be deserving. And if you'd like, we can talk about those.

Dr. John Lantos

Yeah, let's start to go through those. It's fascinating that even as a critic of the standard, you find yourself, what, holding it up as an aspirational goal, perhaps, when you start these meetings.

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Let's talk

Dr. John Lantos

about some of the powerful criticisms of the standard. What do you think are the most devastating ones?

Erica Salter

I think if we ask, is the best interest standard, should it be the go-to legal and moral principle for pediatric decision-making? The answer to this question depends, I think, entirely on what we expect a standard of pediatric decision-making to do, right? So what is the purpose of a standard of pediatric decision-making? There can be a lot of confusion around this, and I think we might be using the same term to mean different things or to serve different purposes. This was, I think, exactly Loretta Koppelman's aim when she wrote an article about The fact that perhaps the BIS actually has three different roles that it plays. It might be serving as an ideal. It might be serving as a threshold for intervention, or it might be serving as a standard of reasonableness. Buchanan and Brock have also written on this, and I think they distill it very nicely into two possible purposes, right? A guidance principle or perhaps an intervention principle. So depending on how you answer the question, what is the purpose of the standard? I think the best interest standard will fare better or worse. So if we talk about best interest as an intervention principle, I think that that's probably the most important role that we want to articulate as bioethicists and as clinicians. We should talk about the standard as a threshold for state intervention. So what I mean by this, of course, is in what context or for what reasons could a judge or a court justifiably override intervention? a parent's healthcare decision for their own child. In this context, I think we need to be of supreme clarity, precision, and consistency. And I think importantly in this context, because this is a principle that is societally enforced by the state, again, by courts and judges, that... whatever we use to serve this role must enjoy wide support by a good majority of society. Back to the question of clarity, precision, consistency, I don't think the best interest standard has historically been able to achieve any of these. Even if we assume maybe that everyone can agree that a best interest determination involves, let's say, a calculation of benefits and harms, and that calculation perhaps leads us to a decision that maximizes benefits and minimizes harms for a particular child, we're still left with I think really important questions like what constitutes benefit and what constitutes harm? What are the range of benefits and harms that we should consider? Should we only look at physiological benefits or should we also look at things like psychological, relational, emotional, spiritual benefits and harms? And then perhaps how should we assign value or balance these benefits and harms? Depending on your particular worldview or value set, these questions really could be answered in I think infinite ways. So when you, John, say best interest and when I say best interest, it's very probable that we're talking about different things. So I would say, you know, it's unclear what anyone is referring to when they invoke the best interest standard. That's one major criticism. I have a few others if you'd like to get into them.

Dr. John Lantos

Let's go through them. And then once we've done that, we'll talk about... What's left in the rubble, that is, if the best interest standard crumbles as a threshold for intervention, what should we use? But go through a couple of the other critiques first.

Erica Salter

Even if we could perhaps agree on exactly what interests count. So let's take for granted my first critique, right? Let's say you and I can agree on what interests count and how to balance those interests and our calculation yields the same result. Usually a strict application of a best interest standard often requires things that are just simply unreasonable for parents and families to accommodate, right? If we're literally looking at maximizing all the possible benefits to a particular child and minimizing all the possible harms, the results can sometimes sort of seem out of place, I would say, with other types of decisions. So, for example, you and other pediatricians would probably say that it's strictly in the best interest of my two young kids if they don't watch a lot of TV, right? But guess what? My kids watch TV. And my justification for this isn't necessarily that it's better for them, actually. My justification is that it's better for me, that it allows me to take a shower in peace, or it allows me and my husband to have a conversation that isn't interrupted every minute and a half. You know, you might ask, is that a legitimate decision?

Dr. John Lantos

So let me interrupt on that. It seems like what you're describing is... the appropriateness of considering interests other than the child's.

Erica Salter

Absolutely.

Dr. John Lantos

And so while we probably both agree that it would be better if your children watched less television, we also think it would be good for you to be able to read a book or take a shower once in a while, and therefore your interests outweigh theirs without undermining the best interest standard, just undermining it as an absolute and... solitary consideration in decision-making. Am I getting that right?

Erica Salter

Yeah, I think that's right. I mean, what I'm describing here, this kind of micro-decision that parents make, these are the types of decisions parents make all the time, decisions that negotiate the various interests of all members of a family. They do so in nuanced ways and dynamic ways. A lot of them have fairly low stakes. And when they do so, they rarely, I would say, they rarely think only about one member of the family, right? Because decisions rarely affect only one member of the family. So I would think it would be sort of unreasonable to expect parents to make healthcare decisions differently. And I do think that, you know, at least some form of the best interest standard is asking parents to do just that, to consider only the interests of the child that is the patient.

Dr. John Lantos

So we've got two major criticisms on the table, one that people who use the term best interest disagree about what exactly it means. And so you could argue it doesn't mean anything at all. The other is that other interests matter. And what we need to do is weigh those other interests against what we think is in a particular individual child's best interest in a particular circumstance. Are there others? Sounds like the best interest standard is badly wounded. Do you have a death blow?

Erica Salter

We've talked about how perhaps it's inconsistently appealed to and maybe inconsistently applied. We don't really have the same idea in mind when we talk about

Dr. John Lantos

best.

Erica Salter

We've talked about how the best interest standard perhaps is maybe unreasonably demanding and potentially too narrow if we take sort of a traditional approach. or a classic version of the best interest standard. I think that second critique does kind of funnel into a more specific critique about the best interest standard, which is that it really, I think, is an artificial depiction of what family decision-making is, and it fails to respect sort of the family unit as such, insofar as family decision-making involves the negotiation of many interests there should be some acknowledgement that different types of interests might be at play for different families. I mean, I do want to sort of get back to the role that a best interest standard might play as a threshold for state intervention, because I think, again, that is one of the most important standards for us to clearly articulate. Because this is really where the state can exert force over families and parents. Again, I don't think that the best interest standard really achieves clarity or precision or consistency. What might achieve that? I think it's we need to lower the bar and maybe look at something like a basic interest standard, not a best interest standard. So what I mean here is maybe we're aiming not to maximize benefits and completely minimize harms, but we're aiming at some sort of minimum threshold of care, you know, meeting a child's basic needs. There are a few different articulations of this standard. Probably the most popular or, you know, well-known ones in pediatric ethics are Deaconess Harm Principle and maybe Laney Ross's Constrained Parental Autonomy Model. And I think that these models, you know, I'll talk specifically about the harm principle. I think they fare much better as an intervention principle because they get us much closer to our goal. So first, I think the harm principle acknowledges that in decisions about state intervention, we actually... we aren't really interested in what's best or ideal, right? We're interested in determining and enforcing kind of a minimum threshold of obligatory care. We'd want to take very seriously the fact that the state is intervening on kind of natural family decision-making, and we want to make sure that whatever standard we articulate is very clear, and it probably needs to be a pretty minimum standard. And I think we're probably better able to agree on minimum standards than we are able to agree on ideal standards. That's kind of an interesting empirical question if we did surveys about that, but that would be my guess. Another benefit to the harm principle that I find to be particularly compelling is that Diekema turns our attention to process. So he introduces considerations of transparency and generalizability. And these are, I think, really helpful justificatory tools, right? If we're trying to offer the best moral justification that we can for intervening, We want to make sure that we're doing so in a strong, a defensible way, in a generalizable way. So I think maybe listeners or certainly you are familiar with the eight questions that Dekema asked us to consider when we asked the question, is it justifiable to intervene on a decision? Those eight questions, I think, thereby allow us to kind of systematize the process a bit, right? It gives us a little more anchor points on which we can... make better decisions and more consistent decisions.

Dr. John Lantos

And essentially says that, no, you don't have to do what's best for a child. All you need to do is avoid things that are demonstrably harmful to the child. Yes. So when you talk about lowering the bar, that's putting it pretty low. I

Erica Salter

think an interesting critique is, like, is the bar too low? So as I think about these questions, I think about what's at stake. And I think different people will answer that question differently, right? Like what is the minimum threshold? How low is too low? But what's at stake here is, I think, a very serious act, which is intervening and coercing a family to make a decision that they wouldn't otherwise make. So I think that... that might justify a low bar.

Dr. John Lantos

So you do ethics consultations in your hospital, correct?

Erica Salter

We do.

Dr. John Lantos

And how often do you consider seeking state intervention, and how often would you estimate you follow through on that?

Erica Salter

Very infrequently. We do think of state intervention as a last resort intervention, and we really do only consider that in cases where patients Well, a few things have to be true, right? So not only is the decision that the parents are making, does it have to be come at what's Deaconess standard? So significant risk of serious harm, right? So I think that that's kind of what we ask. And usually we're looking at significant risk of serious physical harm here. So things like death or permanent disability. The second criteria, which is something that we haven't really talked about much today, but is the parental decision truly intractable? And have we made a good faith effort to really understand where they're coming from and perhaps find areas of compromise with them? So again, when you move to the last resort of state intervention, I think you clearly set up a dynamic that is us versus them and one that's antagonistic that I don't think ultimately serves what we're aiming for, which is a therapeutic alliance with parents. You know, we want to be on the same team as them and calling in the state usually, I think, produces mistrust and can really harm that relationship. So I would say to answer your question infrequently and how often do we follow through? Even less frequently, I guess. Yeah.

Dr. John Lantos

Yeah. Part of the reason I asked the question is because I was just noticing in our consultation service, in our ethics committee, We often talk about the harm principle or the best interest standard. We often talk about seeking court orders for treatment, but it's extremely rare that we actually do it. We usually manage to find a compromise, as you say, that preserves something of a therapeutic alliance.

Erica Salter

Yeah, and I would say that's a big win for children's hospitals. I mean, I would say, you know, I don't know the details of your consults, but I bet they look fairly similar to ours. And I would almost always rather find that compromise in a way that preserves the relationship rather than sort of, you know, escalate it up, so to speak.

Dr. John Lantos

Many of the intractable disagreements that have made the news in recent years have been situations where parents wanted continued treatment and doctors and nurses thought it was inappropriate. Do you think it ever harms a child to keep that child alive?

Erica Salter

Oh, this is such an interesting and important question, John. So, you know, the harm principle, I think if I'm representing Doug's work correctly, I really think it applies to the opposite situation, right? So when providers or physicians are recommending a treatment and parents are rejecting that recommended treatment, but what you're speaking of is the opposite situation where parents are asking for aggressive care and providers are saying enough is enough and perhaps they're making claims about this child is suffering, this child is in pain. Essentially, I think in those situations, the claim that is being made, probably it's rarely articulated this way, but this child is better off dead is how I would characterize those sorts of claims. And I don't say that to mean that there is any malintent on behalf of providers. So I think these decisions really come down to judgments of suffering and quality of life. And when I think about suffering in the pediatric context, honestly, what I think about are nurses, bedside nurses, for these kiddos that are under very aggressive and complex medical interventions. And sometimes these are the medical interventions that nursing staff or physician staff feel are actually doing the pain, the harm, the suffering to the child. So there's some agency perhaps. The nurses feel as though they themselves are causing suffering because they have to change out lines or adjust the baby in their bed or all the regular sorts of nursing care that are provided. That can be very distressing for nurses and physicians. And I would never question the fact that caring for a child that you think is suffering at the hands of medicine is difficult, nor would I ever question that that experience might be causing actual suffering in the provider, right? So I would take that really seriously. But I say all of that first because I think more importantly is that judgments about suffering in children are very hard to make externally. We really can't know if a child is suffering. I mean, we can ask children, older children that are able to communicate with us. We can ask them, we can hear their voices, and I think we should do so as often as we can. But usually in these cases, we're dealing with kids that can't communicate with us. And so we're just sort of looking at evidence, at behaviors that might indicate to us that they are in pain or suffering. And really it comes down to, I think, you know, is this, how great is this suffering that we're guessing this child is experiencing?

Erica Salter

really, are they better off dead in this situation?

Dr. John Lantos

Yeah, it's something that I think neither the best interest principle nor the harm principle was designed to address, but both are brought out when these controversies arise. Any last thoughts on where we might go from here in improving the process of making decisions in these contentious situations?

Erica Salter

Well, I think it's important to recognize that while the intervention principle or the role that a best interest standard or any standard of decision making might play as an intervention principle is very important. I think it's really important that we also recognize and remember that the vast majority of medical decisions being made for kids are not happening in this territory. Rarely are we thinking about state intervention, meaning For the most part, we do a good job of aligning with families. We do a good job of finding compromises or common territory and values, and we're able to establish that therapeutic alliance and make good decisions for kids that aren't contentious. So I would say that should give us some hope. I also think that in that territory, we need some sort of other principle, and perhaps this is the guidance principle that Buchanan and Brock were talking about.

Erica Salter

we're not talking about state intervention anymore. What we're talking about is the territory of conversation, of relationships, of shared decision-making. And in that territory, we really need to ask what types of values should clinicians be advocating for? Because I think, you know, parents frequently want the opinion of doctors and doctors and other clinicians frequently want to give that opinion. Are they allowed to give any opinion that they believe to be true personally? Are there... maybe sets of values that are more appropriate given their professional identity? I think these are interesting questions, you know, sort of looking at the most common types of medical decisions, which I do think exist above this minimum threshold of state intervention. What happens in that context? I think it would be very well served if we could really sit down and think through a little more clearly what moral imperatives or moral guidance should be at play in that context.

Dr. John Lantos

Well, thank you so much for taking the time to talk to us about all this. I've told you in the past that your papers on best interest are one of the favorites in our Pediatric Bioethics Certificate Program here at Children's Mercy, so I'm sure the students will enjoy this podcast as well.

Erica Salter

Well, thank you so much, John.

Dr. John Lantos

Sure. I've been talking with Erica Salter, who's Director of the PhD Program and an Associate Professor of Healthcare Ethics. at the St. Louis University and the Albert Carnegie Center for Healthcare Ethics. I'm John Lantos, and this is the Pediatric Bioethics Podcast from Children's Mercy Hospital in Kansas City. Thanks for listening.