Transcription:
Is the Best Interest Standard the Best Standard for Pediatric Bioethics

 

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

John Lantos (Host):  Hi everybody. This is John Lantos from the Children’s Mercy Hospital Bioethics Center in Kansas City, Missouri, coming to you back again with our pediatric ethics podcast. We are thrilled to have with us today Erica Salter from St. Louis University where she is the Director of PhD Programs and Associate Professor of Healthcare Ethics and of Pediatrics and at the Albert Gnaegi Center for Health Care 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, PhD (Guest):  Well thanks John. It’s a pleasure to be with you today.

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

Professor 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 are dealing primarily with patient and provider; in the pediatric context, we’re dealing with sort of more of a triad, 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 effects when you look at the adult context as well.

Host:  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?

Professor Salter:  That’s a great question. It’s a standard that has received a lot of criticism in recent years by bioethicists and clinicians alike, myself included. If you 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 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 are 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.

Host:  Yeah, let’s start to delve 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. Let’s talk about some of the powerful criticisms of the standard. What do you think are the most devastating ones?

Professor 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 the standard of pediatric decision making to do. 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 Kopelman’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, 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 fair 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 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 harm and that calculation perhaps leads us to a decision that maximizes benefits and minimizes harm 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 harm 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 harm? And then perhaps how should we assign value or balance these benefits and harm? 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 are talking about different things. so, I would say 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.

Host:  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.

Professor Salter:  Even if we could perhaps agree on exactly what interests count. So like let’s take for granted my first critique, right. Let’s say you and I can’t agree on what interests count and how to balance those interests and our calculation yields that same result. Usually a strict application of the best interest standard often requires things that are just simply unreasonable for parents and families to accommodate, right. If we are 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 might ask, is that a legitimate decision?

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

Professor Salter:  Absolutely.

Host:  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?

Professor 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 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.

Host:  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? It sounds like the best interest standard is badly wounded. Do you have a death blow?

Professor 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 best. We’ve talked about how the best interest standard perhaps doesn’t – is maybe unreasonably demanding and potentially too narrow if we take sort of a traditional 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. In so far as family decision making involves a negotiation of many interests. There should be some acknowledgement that different types of interests might be in 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 well-known ones in pediatric ethics are Diekema Harm Principle and maybe Laney Ross’s Constrained Parental Autonomy model. And I think that these models, and I’ll talk specifically about the harm principle. I think they fair 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 the best or ideal. We’re interested in determining and enforcing kind of a minimum threshold of obligatory care. We 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 generalized ability and these are I think really helpful justificatory tools. If we are 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 and a generalizable way.

So I think maybe listeners or certainly you are familiar with the eight questions that Diekema asks us to consider when we ask 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. It gives us a little more anchor points on which we can make better decisions and more consistent decisions.

Host:  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.

Professor Salter:  Yes.

Host:  So, when you talk about lowering the bar, that’s putting it pretty low.

Professor Salter:  I 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. 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.

Host:  So, you do ethics consultations in your hospital, correct?

Professor Salter:  We do.

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

Professor Salter:  Very infrequently. We do think of state intervention as a last resort intervention. And we really do only consider that in cases where – well a few things have to be true. So, not only is the decision that the parents are making does it have to be come at with the Diekema standard. So, significant risk of serious harm. So, I think that that’s kind of what we ask. And usually we are 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 it’s is the parental decision truly intractable and have we made a good faith effort to really understand where they are 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. 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.

Host:  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.

Professor Salter:  Yeah, and I would say that’s a big win for children’s hospitals. I mean I would say, 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 escalate it up so to speak.

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

Professor Salter:  Oh, that’s just such an interesting and important question John. So, the harm principle I think if I’m representing Doug’s work correctly; I really think it applies to the opposite situation. 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 are 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 is 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 behave of the providers.

So, I think these decisions really come down to judgements of suffering and quality of life. And when I think about suffering in the pediatric context, what I think about are nurses. Beside 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 is 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.

So, I would take that really seriously. But I say all of that first because I think more importantly, is that judgements 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 is this – how great is this suffering that we’re guessing this child is experiencing and really, are they better off dead in this situation.

Host:  Yeah, that’s something that I think neither to 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?

Professor Salter:  Well I think it’s important or 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 needs some sort of other principle and perhaps this is the guidance principle that Buchanan and Brock were talking about.

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 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 or are there maybe sets of values that are more appropriate given their professional identity? I think these are interesting questions sort of looking at the most common types of medical decisions that 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.

Host:  Well thank you so much for taking the time to talk to us about all of 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.

Professor Salter:  Well thank you so much, John.

Host:  Sure. I’ve been talking with Erica Salter who is Director of the PhD program and Associate Professor of healthcare ethics at the St. Louis University and the Albert Gnaegi Center for Health Care Ethics. I’m John Lantos and this is the Pediatric Bioethics podcast from Children’s Mercy Hospital in Kansas City. Thanks for listening.