 So for those who came in late, I am substituting for Maggie Moon, Laney Ross from the University of Chicago. So the talk I'm going to give today, so since Bill wants us to change codes and the whole way we think about codes, I've decided why not get rid of the whole best interest standard, which is sort of the bread and butter or the primary way we think about pediatrics. Because anytime somebody says pediatric ethics, they say the best interest standard. So I'm going to argue that the best interest standard is not the best standard for pediatric decision-making. And so I want to look at the role for best interest in medical decision-making. But I'm going to limit my talk to children who are members of intimate family. So I'm not talking about children who are in foster care or anything of that sort. By intimate family, I refer to a relationship of two or more individuals in which at least one is an adult who is capable of and responsible for providing for the primary care and the primary goods of at least one child. So I don't care if it's a single-parent home, if it's a two-parent home, if it's a homosexual, heterosexual, if they're married or not, but at least one adult and one child. And by primary goods, I'm using the concept by Rawls, referring to things such as food, housing, shelter, education, emotional, and psychological love. So what is the best interest standard? Virtually all statements in pediatrics begin with that we need to focus on the best interest, which means to maximize benefits and minimize harms to the minor. And this is actually true in the US as well as internationally, true in the child rights standards and things of that sort. But actually, if you think about medical ethics and use the standard by Buchanan and Brock, they talk about four principles. Mark has four boxes. Beecham and Childress have three principles, but Buchanan and Brock have four principles, and they are, what are the patient's underlying values? The second is who's the appropriate surrogate and in pediatrics, we presume it's the parent until proven otherwise. They then talk about what principles should guide, and as I've said, historically and traditionally, it's the best interest, and then it's the intervention principle is when should the state intervene? Because for those who want to be paternalistic, you should become pediatricians because we are allowed to override when parents don't make, quote, the best interest response. But in America, the guidance principle is best interest, but we have a separate standard for intervention. We talk about the harm principle, and that's really important because what's best and what's harmful, there's a huge gray area in between. In the UK, by contrast, the best interest is used as both the guidance principle as well as the intervention principle, and that was shown very clearly in the case of Charlie Gard. So this was the case of the child with a mitochondrial defect who was dying and had, in a sense, exhausted all the medical treatments that they had in the UK and the medical team wanted for them to withdraw care treatment and the parents wanted them to continue and actually found an experimental protocol by somebody here in the US and they went and did a GoFundMe page and got 1.3 million pounds and wanted to come over, and yet in the UK, the doctors went to court saying it is in Charlie's best interest to have the treatment withdrawn. The parents said we want to take him to the US to get this treatment, and while many in the UK said that's a reasonable decision, our decision is best, and they went to court and the court said we go with what's best for the child and what's best is to have treatment withdrawn and the treatment was withdrawn, which would never happen in this country. And so, and this has happened in many other cases throughout internationally because if you really hold to a best interest standard, you really have an obligation not to do what's quote good enough, but to only do what is best, and then you get into this whole debate about who decides what's best, but it's clear in the UK that it's the courts to get to make that final decision. So one question to ask when we ask what is in the child's best interest is what interests are we talking about? Are we talking about those self-regarding interests, so interests that are focused purely on the child, whereas for many in the adult world, for example, we'll talk about other regarding interests, interests that we might have in helping our families and things of that sort. We also have the difference between what's medically best versus what's best, all things considered, being allowed to consider social considerations, religious considerations and things of that sort. We have to distinguish between short-term interests, what's in our best interest in the next day or two versus what's in our best interest over the long term. Now, outside of the intimate family, one can imagine that we're gonna hold decision makers to a very self-regarding, medically focused set of immediate interests. So when we get frustrated by the guardian who's assigned to the 80-year-old and we all think it would be appropriate to start limiting treatments and things of that sort and the guardian says, keep going, do everything, part of it is because if you don't know the child and the child or the adult is outside of an intimate household, the only thing we can think about or talk about is what's objectively best and life is usually better than not life and focusing on what's best for me is usually better than focusing on third parties about whom I might not have any cares or interests. So that's the difference between talking about what's best within an intimate family versus what's best in sort of a atomistic world view. So within the intimate family, I would argue that focusing on what's best for any one individual would be a big disservice because it assumes only one child because once you have more than one child, what's best for one child might not be best for the other and it also assumes that parents hold this fiduciary role like your banker is supposed to maximize how much money is in your bank at the end of the day but parents aren't just fiduciaries, they also have valid interests and needs of their own. So should we hold parents to a best interest standard? Actually when you look at the literature, most say no. So Buchanan and Brock say no. The best interest should only serve as a regular of ideal but not as a strict and literal requirement. I also have written that no because parents' obligations towards their other children as well as their own legitimate self-interest can conflict with what maximizes one child's well-being and that these other obligations and interests may take precedence over the child's best interest. Now I do hold parents to what I would argue is a Rawlsian basic interest. We have some obligations to provide all of those primary goods that I mentioned at the beginning. Erika Salter is a young philosopher at St. Louis University and she argues no because it's not even clear what interests we're referring to going back to all those distinctions that I made about what interests we should be focusing on. But if we don't hold parents to a best interest the question comes in what standard should we hold them to? And one is from a child psychiatrist named Winnecott who actually argued for the good enough parent so the good enough standard that what we need to hold parents to is not what's best but what's good enough. Goldstein et al from the child psych group at Yale University argued we hold parents to what he would call the least detrimental alternative meaning that if you think about what standard we hold them to we're also thinking about when should we intervene and we should only intervene over parents if that is the least detrimental alternative. So giving parents a lot of leeway until they hit sort of the harm principle of abuse and neglect. And actually Decama literally calls it the harm threshold. So basically we have this problem because we have the best interest we have abuse and neglect and we have this whole region in between good enough and that's gonna we have to say to ourselves if we have principles of guidance and intervention that sort of leave this gray area how are we going to know when to invoke the intervention principle or the harm principle of abuse and neglect. So what I offered in my book and I have to confess it took me 20 years to have the courage to reread it but what I offered then and I actually would rewrite it in many ways but actually think I have the principle right which is a principle of respect for persons. It has two components which is a negative component which holds universally that we all have an obligation not to abuse neglect and exploit children but that some hold specific positive obligations to children. Usually we're talking about their parents so it only holds in particular relationships compelling particular individuals to provide particular children with the good skills, liberties and opportunities necessary to become autonomous adults capable of devising and implementing their own life plans. The reason that has a value first I should say why should we give parents that's great leeway and Buchanan and Brock offer four very compelling arguments. First because in most cases it's the parents who care deeply about their child's welfare know them the best and their needs and are best able to ensure that the decisions made are going to promote the child's welfare. They also talk about the fact that parents bear the consequences of these choices. They also talk about rights of parents that parents have within limits the right to raise their children according to their own values and to seek to transmit these values to their children. And finally they argue from a very group perspective that the family's a valuable institution and its preservation requires some degree of freedom and privacy within limits to make decisions about the welfare of those who cannot make decisions for themselves. I think these are really four strong I'd like to add a fifth argument which is to allow parents to make intra-familial trade-offs provided that it doesn't sacrifice the basic interests of any child member. And so in a sense again, reiterating that once you have more than one child the idea of giving the best fails because you can't give the best necessarily for all children. So what is the role of the child? First, in pediatrics we presume that parents are the presumed decision maker because the child lacks it and because even when the child has some degree of decision making parents are still responsible for their child's wellbeing. This doesn't mean that parents should ignore their child's preferences and in fact one could argue that respect for the developing and to some degree actualized personhood of the child means that we do have an obligation to listen to them. That doesn't mean though that they get the final decision. So the benefit of this model of constraint parental autonomy is it's gonna place that arrow at the point of what's good enough versus what hits abuse and neglect so that we don't need to have two different principles and that's gonna be really important because right now we get into these fights about is the parent acting in the child's best interest when we really don't mean to hold them to it and yet we really don't wanna have sort of just the lowest bar of let's only think about abuse and neglect. So we need a principle that's gonna be robust enough to think about what children need to flourish as well as when do we need to intervene to help these families. So the constraint parental autonomy allows us to identify when good enough is no longer good enough and crosses the threshold into abuse and neglect. And it doesn't require that parents deny or ignore their own interests and thereby promotes the family as a valuable institution for child rearing and self-fulfillment as well as the institution in which children can develop the skills to flourish. So thank you very much. Hi, Laney. I love that idea and I did when I read it in your book many years ago and I still do. And I think you infer this but it also applies to, I think, adult surrogate decision making as well as child decision making. Certainly decisions are made in the context of family. One term I've always struggled with and I wonder if you could talk about this a little bit is the use of autonomy when we're talking about making decisions for another. Totally agree. And I wonder, I mean, it almost suggests in this case and I don't think you mean to suggest this but that the child is a property or kind of an extension of myself as a parent as opposed to sort of this own unique being who I'm responsible for and it's more about power. And I don't know that sounds kind of awful, constrained parental power or control but I wonder if there's an alternative. If I could rewrite it, I would call it constrained parental authority. I totally agree with you. Laney, I'm gonna pick up on the autonomy issue as well because the aim was to help the child become an autonomous agent right and I think that's an ableist term in some ways for the child with disability who will never be autonomous. I'm just wondering if there's another word in terms of being able to help the child flourish and achieve their maximum potential or self-expression or self-determination without using the word autonomy because I think that we're also talking about weighing the power of individuals within the family and who is the most vulnerable. So I really like that Christy and I like the concept of flourishing. I guess I still want autonomy in that case or where I totally would rewrite it as constrained parental authority because I don't think it's about the parent autonomy. I still think we wanna be talking about the child's autonomy because so there are two very important values. One is about well-being and flourishing and one is about autonomy and being able to make decisions for oneself and I don't wanna lose the fact that I do think it's part of a parent's responsibility to actually help their child to be autonomous to the extent that they can. If we only focused on flourishing it would allow in a sense the parents to retain decision-making authority over the child forever and in some cases that might be necessary but in most cases it isn't and I don't wanna lose that that that's part of our responsibility is to in a sense give the child the wings to the extent that they can fly. Thank you, Lanie. As usual, rigorously articulated. I wanted to push a slightly different argument although the last I certainly of course agree with. What about those cases and this overlaps with a little bit of what Bill was talking about where you're in a situation where there's gonna be long-term very different lifestyle outcomes not necessarily cognitive but children who are gonna have medical complexity and it is very frequently the case that those situations even super parents are gonna have a difficult time fulfilling the basic Rawlsian needs of those children. How do you then understand those parents who are typical people but now are in a very atypical situation and how do you then figure out your framework especially that what you were saying positive need for allowing to give everything for the child's flourishing autonomy whatever word you use. Well, right, so again in pediatrics maybe I'm not fully understanding your question but in pediatrics it does take a village, right? And so the state does get to intervene if parents are unable to meet their child's basic needs even if well-meaning parents, right? So we do have services that we can provide for families when they're unable to provide for those basic needs. But I mean, there are some children who even in that situation the parents for their own reasons or because the state's lack of resources as we've just seen can't do it and we have set up a system where those families currently have to be identified as being neglectful and for the child to be cared for by somebody else. Is there a different moral framework we could figure out that these families aren't able to do the good enough but they're not neglectful? I, they're either good enough or they're neglectful, you can't, I don't see how you can have it both ways. I mean, neglectful doesn't have to be sort of, I guess what you're struggling with is neglectful seems very judgmental, right? That they're failing and what we're saying is when we say medically neglectful, we can say that they're well-meaning even if it's, even if they can't achieve those goals. So that's why I'm not looking necessarily to take custody over these kids but in the sense that concept of medical neglect is or psychosocial neglect is that they need other supports. Right, but I mean, practically speaking, we have to take, we actually have to take parental rights to offer them to another family who can do it. Or we could provide that first family with the resources so that they can get into that good enough standard. There. Yeah. Thank you. That, you know, Peter and the previous questions said that there might be gaps when you deal with individuals with complex disability. And there can be these rules applied in pediatric practice. And then when the child who is now an adult with disability turns 18, number one, the parents are not officially the guardians. And number two, the resources available to that individual with disabilities are not of the same standards. And embedded in all of this is how do you get the supports? There is no right to housing. There is no right for adults to housing. So that if a child who becomes an adult with disability needs housing, you're stuck. And so those are some of those conflicts. And I think, and the double standard is that at times, the larger context of adult individuals with disabilities is that the state protects them in case whoever is in the current environment isn't doing good enough. But in reality, the state neglects them. And for the families to access support, they have to take on the blame. So Mike, I think you're totally right. The model was meant to hold for pediatrics, but as Bill started this whole session, maybe all of medicine should learn from pediatrics. And if we created that world, then we would be looking how we can actually provide support for those who will never get to full autonomy or even just needing some help. So totally agree with you. I'm gonna stop questions because I wanna say more or less on time.