 On behalf of the McLean Center, the Center for Health and the Social Sciences, Chess, and the Bucksbaum Institute, Dr. Miltzer and I, I see Dr. Miltzer are delighted to welcome you to today's lecture in the 2019-2020 lecture series on the present and future of the doctor-patient relationship. It's a delight and pleasure to introduce our speaker today, Dr. Laney Ross. Dr. Ross is the Carolyn and Matthew Bucksbaum Professor of Clinical Medical Ethics and is a professor in the departments of Pediatrics, Medicine, Surgery, and in the College. Laney co-directs the University of Chicago Institute for Translational Medicine and is the Associate Director of the McLean Center here. Dr. Ross earned her A.B. from the Woodrow Wilson School of Public and International Affairs at Princeton, her M.D. from the University of Pennsylvania, and a Ph.D. in Philosophy from Yale in 1996. Laney trained at the Children's Hospital of Philadelphia and at Baby's Hospital at Columbia University. Dr. Ross is a primary care pediatrician here at the Comer Children's Hospital. Her research portfolio focuses on ethical and policy issues and pediatrics, organ transplantation, genetics, and human subject protection. Laney has published four books and more than 200 articles in the peer-reviewed literature. Currently, she's completing a book, I think within a week or two, on living donor transplantation written with Dr. J. Richard Dick Thistlethwaite that was funded in part by a Robert Wood Johnson investigator award in health policy. Recently, Laney was awarded a National Library of Medicine grant from the NIH to write a book about the rule of siblings in health care. Laney Ross currently serves on the editorial board of the Journal of Pediatrics, the Journal of Empirical Research and Human Research Ethics, the Journal of Clinical Ethics, and Perspectives in Biology and Medicine. Dr. Ross was a recipient in 2014 of a John Simon Guggenheim Memorial Foundation Fellowship and in 2015 of the William Bartholomew Award in Clinical Excellence from the American Academy of Pediatrics. Laney also won the Patricia Price Brown Bioethics Award from the University of Oklahoma. Dr. Ross's talk today is entitled, as you see behind me, Better Than Best, Interest Standard in Pediatric Decision Making. Join me please, giving a warm welcome to Dr. Laney Ross. Thank you very much for that warm welcome. I'm so not used to wearing a microphone. So yes, my talk is Better Than Best, and I'm going to be using Charlie Gard as a case study. So my outline is that I'm looking forward to talking about pediatric decision making is different than adult decision making. So I'm going to do one slide on that, which is going to convince you that pediatrics needs its own ethics as well as its own time in any curriculum. Then I'll ask who is Charlie Gard? Look at Best Interest is understood in the U.S. as well as in the U.K. And then look at alternative principles if we decide to get rid of Best Interest in pediatric decision making. So let me start then by showing how pediatric decision making is different than adult decision making. And this is probably one of the most important slides because it sort of summarizes why you can't just downsize adult medicine and make it into pediatric. So in adult medicine, we've been hearing all year people talking about the doctor-patient-diadic relationship. And in pediatrics, it's triadic. We have a doctor, a patient, and a parent. And the fact is that as a pediatrician, my primary responsibility is to the child. But I'm not allowed to do anything to or with the child without the permission of the parent. So in a sense, we've split the parent, the role of patient into both the patient as a child and the parent as the decision maker. So just from there, we know that we're dealing with a whole different entity. The second is that in adult medicine, we presume that adults have decisional capacity and they can make decisions for their own. In pediatrics, the presumption is that children don't have decision making capacity. There are exceptions. There are exceptional things like we talk about emancipation. A child who's become a parent herself, a child who's married, a child who's joined the military, all become emancipated for those reasons. Children can also make decisions for themselves on the things called the specialized consent statutes, which allow teenagers to make decisions with regard to contraceptive, drug abuse, cigarette smoking, as well as mental health issues without the involvement of their parents. But those are the exceptions. Basically, for most pediatricians in their daily job, we're dealing with parents as a decision maker. And that's another way that pediatric differs from adult medicine because in adult medicine, when an adult lacks decisional capacity, adults can choose who will speak for them. They can choose to have it be their spouse. They can choose it to be an adult child. They can choose it to be their best friend. They can choose it to be anyone they want. In pediatrics, the presumption is that the parents will speak for the child. And I say parents and plural because both parents have an equal say, even if one parent is not involved. In adults, if you're a lot of choose your own decision maker, if you don't, then the state will do it for you. We have an Illinois Health Care Surrogate Act. Surrogates are expected to act first according to your own advance directive. If you've written one, if that doesn't exist, then we're supposed to act under the principle of substituted judgment. What would Lainey want to be done in this case if she could speak for herself? If those wishes are unknown, and for many of you in the audience you know very clearly what my wishes are, but if those wishes are unknown, then you would use a best interest standard. In contrast, in pediatrics, parents are presumed to start with the principle of best interest, and so that even overrides what an adolescent might say here she wants for herself. Then adults have the right to accept or refuse all medical treatment, including life-saving medical treatment. And it's not like they get to say, I don't want this and we're done. Obviously we're going to try to convince them of what's best for them clinically. We're going to try to understand why they're refusing and things of that sort. But in the end, the competent adult can refuse life-saving treatment. In pediatrics, parents can refuse some treatment, but not all treatments. And that's in part because the states have obligation to the child as well as the parents do. And so that leads to in a sense, in pediatrics, when parents make a decision that we think is harmful or neglectful, we can get the state involved. So that's a really big difference between pediatrics and adults. And finally, the last big difference is the concept of confidentiality. So you go to your doctor, you close the door, and you assume that you're going to have a private conversation that's not going to be shared with others without your permission. Pediatrics, the question is who has privacy rights? Who is confidentiality and from whom? Does the parents have rights to privacy against the child? Is the child against the parent? And what role do we even have for the physician in that relationship? So really very different. So when we talk about making decisions for pediatrics, we're starting with the presumption of parents are going to make decisions for their kids. There's a framework that I use. So I always joke that in bioethics, we all talk about the four principles from Beecham and Childress. In clinical ethics, we talk about marks for boxes. And in pediatric ethics, I think the most powerful framework is actually one developed by Brock and Buchanan in a book called Deciding for Others. And they have four questions. So we either have four principles, four boxes, or four questions. I'm going to stick with the four questions. And the first is, they asked, what are the underlying ethical principles? And in adults, the underlying ethical principles are self-determination and well-being. And what's interesting is when you move to pediatrics, two things shift. One is we have the shift from self-determination being the primary interest to being the secondary interest. And now we focus on well-being or what's best for the child before we start talking about interest in self-determination and autonomy. But you'll notice that Brock and Buchanan had a third principle, and that's parental interest. And so right from the start, there's an acknowledgement that parents aren't just, in a sense, the fiduciaries of their children, that they have interests of their own, and they're going to have to somehow negotiate that tension when what's best for the child may conflict with needs and interests of the parents. Under the surrogate principle, so who is the appropriate decision maker, as I've already shown with the first slide, in adults, they can choose any adult in pediatrics the presumption it's both parents. The guidance principle, what principles should guide them? Again, from the last slide, you could see that in adults, an advanced directive determines what should guide you. I can tell you exactly what I want, otherwise substituted judgment, trying to put yourself in my shoes. And finally, if none of those are known, you can go to best interest. Impeds, we're going to start with best interest, but not really. And that's going to be a main part of my talk, particularly not really here in the United States. And finally, when do we intervene, or when should the state intervene? And in adults, the only time we intervene when we have a surrogate who's acting in bad faith. So if a surrogate were to say, don't give my dad those antibiotics, because I'm looking to inherit $2 million, we would think that person's acting in bad faith, and we'd try to get another surrogate to make healthcare decisions for his father. In pediatrics, we intervene a lot more often. We intervene when we cross a threshold of harm or abuse and neglect. And we'll talk about that. But one of the things that we are already going to be struck with is what's best for the child, already his intention with parental interest, or might be, but we don't actually intervene until we get to a threshold of abuse and neglect. So there's this whole area between what's best and when we're going to intervene, an area you can call sort of the gray zone or the good enough zone, where parents make a good decision. There might be a better one, but it doesn't reach the point of abuse and neglect. So Charlie Gard was born in August 2016 and died shortly before his first birthday. He was an infant born in London who had a mitochondrial DNA depletion syndrome, which is a rare genetic disorder that causes progressive brain damage and muscle failure. It has no treatment and usually causes death and infancy. The case became controversial because the medical team and the parents disagreed about whether experimental treatment was in the best interest of the child. So Charlie is hospitalized, and in October 2016, he was transferred to Great Ormond Street for impending respiratory failure. He was put on a ventilator during which time the diagnosis of MDDS was made. And in January, after Charlie had seizures that caused brain damage, the gosh physicians decided that further treatment was futile and would only prolong suffering, and they were recommending withdrawal of treatment. His parents in the meantime, between October and January, had actually done research on their own, and had found an experimental therapy that was being used for MDDS but for a very different type of MDDS, an MDDS that only affected muscles in the body and didn't cross the blood-brain barrier. Parents wanted to try this experimental treatment at the same time that the physicians were talking to the parents about removing the ventilator and starting palliative care. So the parents said, well, if you won't try this experimental treatment, we want to raise, they went to GoFundMe, they raised 1.3 million pounds, and they wanted to be transferred to a New York hospital. Now, I should note that the treatment that they were asking for was actually an oral, so by mouth, although in Charlie's case, since he didn't eat, it would be by G-tube. It was relatively nontoxic. Its major side effect was diarrhea, but it'd never been used in a child with Charlie's form, and there were many reasons to believe it wouldn't work. But there was a doctor, Michio Hirano, who had not examined Charlie, but he proposed this treatment and said maybe it can help. So the disagreement in the U.S. and the U.K. were what is meant by best interest, how is best interest determined, what role best interest should play in decision making, when do we challenge a parent's determination of best interest, and when and how pediatric decisions are challenged. So what's meant by best interest in the U.K., because that's where Charlie was living, and how is it determined? So it turns out the British Medical Association in 2019 even updated their statement, and they said, who decides what's at a child's or young person's best interest? And they wrote, where a child lacks competence, there is a presumption that the child's parents have the child's best interest at heart. This is not always the case, however, and doctors should be alert to situations in which parents' decisions appear to be contrary to their child's interest. They then go on where a young person is competent. The young person's views on what would be in his or her best interest are of importance to the decision making process, although they may not always be determinative. So this is already an important distinction, although not relevant to Charlie, but a much greater voice for the child when the child is sought to have what they call gillic competence. And then they ask what needs to be taken into account when assessing a child or young person's best interest, and they say, quote, it's an objective test. It looks at what would be in the child's actual best interest, taking account all relevant factors. It is customary to assume that a person's interests are usually best served by measures that offer the hope of prolonging life or preventing damage to health, but this is not always the case. And so these are the factors that they say go into calculating what's in a child's best interest. The first, although more appropriate for an adult patient, but also applied to children, is the patient's own wishes, their ability to understand the benefits and risks, their ability to participate in the decision making, as well as the patient's physical and emotional needs. They then talk about, right, so here in the sense what we're putting is patient preferences first. They then talk about the clinical indications, that a clinical judgment about the effectiveness of the proposed treatment, where there's more than one option, which option is least restrictive of the patient's future choices, the likelihood and extent of any degree of improvement in the patient's conditions, and the risks and benefits of treatment and of non-treatment. And then they say, but let's consider those parental interests, the views of parents and others who are close to the child, as well as the patient's religious or cultural background, and then the views even of the health care providers involved in providing care to the child or young person. So there are a lot of factors that they want to include in their determination of best interest. Then when they specifically look at treatment in life limiting and life threatening conditions, this was written actually by the Royal College of Pediatrics and Child Health. They say the legal considerations and the basis for making decisions for withholding and withdrawing life savings treatment are grounded in both statute and case law. The guiding principle is the best interest, albeit with greater consideration of the interests of families and of their rights. So already, although we say we're talking about best interests, we're already allowing for consideration of families, so really getting to Buchanan and Brock's third concept of what are the underlying principles, it's not just best interest and well-being and autonomy, it's also about parental interest for the family. They then go on to say the ethical basis for withholding and withdrawing life sustaining treatment involves consideration of a child's best interest. It too reflects a change in emphasis that places greater recognitions of children's rights to be actively involved in decision making while considering broader family interests. And then they say, nevertheless treatments that are no longer in the child's best interest may be withheld, withdrawn, or limited. This applies to treatments that merely sustain life but that neither restore health nor confer overall benefit. And so the question first becomes then in who gets to define what's in this child's best interest, who gets to define whether it's merely sustaining life versus potentially restoring health nor conferring benefits. And they talk about three cases when life is limited in quantity, when life is limited in quality, and the informed component refusal of treatment again because they empower adolescents who have decisional capacity to make decisions even without their parents. But they say there are three reasons to limit treatment, the burdens of the treatments, the burdens of the illness, and the lack of ability to derive benefit. And so what really distinguishes it is who has final authority over defining what is best. And they are very clear that if a parent makes a good decision and there's a better decision given by the doctors or by the state, that the state and the doctors can override the parents. So a good decision can be overridden by a better decision determined by the doctors and or the state. Very different than here where we give much more authority to the parental determination of what's in a child's best interest. They literally write, the court must exercise independent and objective judgment on the basis of all the evidence and consideration will be given to, amongst other factors, the likely quality of future life for the child with and without treatment, the intolerability of the treatment, relevant clinical considerations, pain or suffering, and the pleasure a child may derive. But they view it very much as an objective decision and one that can be made by third parties other than the parents. And if it's determined that the doctors think there's a better treatment, then they can override the parents' good decision. And they say the court will conduct a balancing exercise in which all relevant factors await. The court will assess the benefits and burdens of giving or not giving potential treatments and of maintaining or drawing certain forms of treatment in order to assess best interest. So basically when there's disagreement between teams and families, we go to the courts who get to make a, quote, objective best interest determination. Let's compare that to the way we think about best interest here in the U.S. So our definition of best interest is defined in the Buchanan and Brock book is acting so as to promote maximally the good that is the well-being of the individual. And notice I underline the word maximally. And how to determine it in Buchanan and Brock, they write, determine the net benefit for the patient of each option, assigning different weights to the options to reflect the relative importance of the various interests they further or thwart, then subtracting the costs or disbenefits from the benefit for each option. The course of action to be followed is the one with the greatest net benefit to the patient. The AAP in looking at foregoing life sustaining treatment also says, also endorses best interest. And it's actually been endorsed by almost every pediatric medical society in North America and Europe, but interestingly they acknowledge that the phrase best interest is highly subjective and may be difficult to define in any given situation, but it remains important to maintain the centrality of the patient's interest when developing goals of care. So here we're going to acknowledge it's subjective and so we're going to lean towards who's the appropriate decision maker being the parents in contrast to an objective standard that's going to be determined by the state or the courts. They talk about when balancing benefits and burdens, applying the best interest standard leads to favoring interventions that are likely to provide greater benefit than burdens for the child and discourage the initiation or continuation of interventions that are likely to lead to greater burden than benefit. But again, acknowledging it's a subjective determination. And when looking at who has final say, they say get involved in ethics consult may be useful to the health care team and to families when ethical considerations about foregoing life sustaining medical treatment are raised to require clarification. And when they talk about how to deal with it, what they talk about is a negotiation between ethicists, physicians and families. So in the U.S., basically the answer is the courts are the last resort. We want to do reasonable accommodation of families acknowledging the subjectivity of the best interest standard. It does say though it may be ethically supportable to forego life sustaining medical treatment without family agreement in rare circumstances of extreme burden of treatment with no benefit to the patient beyond the postponement of death. And then they add that medically administered nutrition and hydration like other life sustaining treatments constituted interventions that may be withheld. So a very different subjective approach in contrast to basically listening to the parents, although negotiating with them through the health care team and ethics committees without even talking about courts until it's the last resort. So what role does best interest actually play in pediatric decision making? Again, going back to these four principles from Brock and Buchanan, the two I want to focus is on what should guide the parents because we've already agreed in the sense that it's going to be the parents and that the values are supposed to be well-being, then autonomy, then parental interest, and then when should we intervene. So there are three possible ways of dealing with this. One is using their framework. We could either say that best interest can serve as both guidance and intervention and that has the advantage that we don't have that gray area. If the fact is is that what guides parents are best interests and we intervene when they're not acting in the best interest, we've solved all of our problem of that gray zone when parents make good decisions because we must make the best decision. Prong two is to say that best interest is guidance. We have a harm principles intervention and we sort of allow parents to get away with good enough but we're really sort of aspiring to at least doing what's best for the child. And Prong three would be an alternative principle and I'll talk about some work that I did getting my PhD. So best interest is both guidance and intervention which is what's used in the UK. I'm actually going to give a description of what that would look like by Loretta Koepelman who is here in the US who also believes that the best interest standard should hold as a threshold an ideal and a standard of reasonableness. So meaning that it should stand as both guidance and intervention. She says as a threshold for intervention and judgment as in child abuse and neglect it's a two-step process. First you have to determine that the parent's decision has reached some threshold of harm and neglect and then you involve third parties to determine what's best for the child. As an ideal so as to establish policies of prima facie duties she acknowledges that it's probably best not to be taken literally as that would be too demanding. And finally she has as a standard of reasonableness seek the most advantageous decision given the available options but don't ignore the needs and rights of others. So she's trying to argue it's both a best interest as guidance as well as intervention but I'm going to argue that by definition best must be understood literally and must ignore the needs and rights of others. If you really want to do what's maximally best for the child then you have to focus on the child's needs exclusively and that's one of the reasons we in the U.S. have moved away from an objective to a subjective standard. Thaddeus Pope another lawyer he also wants to argue that best interest can serve as both guidance and intervention principle and he says as a guide what best interest does is it answers the question what course of treatment is in the child's best interest and doctors give a range and parents select what they believe is best and he says as a limit it answers the question has the parent abused his or her discretion in determining what course of treatment is in the child's best interest and here he argues that clinicians and state authorities determine when the government should intervene with parental decision making but then he says as a limit decision should be based on abuse and not merely disagreement so it's not enough for the docs just to disagree with the parents they really must say that the parents actions are abusive but that means that again we're still not holding parents to a best we're allowing them to make good enough decisions as long as they are quote good enough and in the sense what he's really doing is holding parents to a harm principle which is prong two it's going to be when we have two different principles so he's really not holding the intervention principle as the as best interest so what happens when you do then distinguish between best interest as guidance and now allow for the harm principle as intervention and don't think it was the one who's done the most philosophical work on the concept of using the harm principle is the real reason we intervene in parent decision making and he writes although seeking the best interest of all children represents a laudable goal and is a valid basis on which to make medical recommendations it does not represent the best means for determining when one must turn to the state to limit parental actions he says supporters therefore modify best interest standard to mean the range of appropriate decisions that a parent might make on behalf of a child and actually Buchanan and Brock agree with him to a large extent they say that best interest should be a regular of ideal it should be aspirational even if that's not the standard to which we hold parents again this suggests that we really don't mean that parents have to act in their child's best interest but just in their good enough interest Goldstein Soltman and Freud wrote a series of three books back in the late 70s called before beyond and in the best interest of the child and they asked the question when should the state intervene both in medical situations as well as in legal a lot of custody decisions and their answer is when the state is the least detrimental alternative so they make a big point of saying even when parents don't make a good decision the question is is it more harmful for the child to be removed from the family and to allow third parties to intervene than it is for the to allow the parents to make a less ideal decision and so in other words how to act when the parents fail to be best their answer is if you really think that your intervention is going to do less harm or it's going to do more good than harm than any other decision that's the only time that the state should intervene which is in a sense allowing a lot more discretion than even Decoma was trying to argue for more recently but there's this big gap the problem with having a separate principle of of guidance versus intervention what I call the good enough gap and so the question is that makes it very arbitrary where we draw that line when is good enough become abuse and neglect and it's led some to ponder how could we develop a single principle that would in a sense allow for one line above which parents get to make their decisions for their children below which state intervention and it's something I've called constrained parental autonomy which focuses that parents decision should be respected as long as the parent are making decisions that provide for the child's basic interest what I using the work of John Rawls talking about their basic interest so interest in health care interest and education interest in having a family which within a realm of privacy and when parents fail to provide for the basic interest in needs of their children and it falls below that threshold that's when the state intervenes so the benefit of it if we can define exactly what those basic roles and interests are is that we have a single line above which everything goes some decisions are better than others but we respect all of them and we only intervene when we fall below that threshold so one of the things is that this principle just to give a little bit of background of what it it's actually based on the concept of respect for persons but it has both a positive and negative component the positive component only holding in certain so we all have obligations to all children but when you're the parent you have different responsibilities than the state and other people have right so I have an obligation to feed my kid to get my kid to education and things of that sort most of the rest of the world has an obligation not to do harm to my child and so there's this notion of positive component is very much based on intimate relationships where the negative component told universally and all people have responsibilities to prohibit the abuse neglect and exploitation of old children and so as a guidance principle how how constrained parental autonomy works it's promoting the child's basic interests both in the positive sense of what the family's obligations are and in the negative sense of what the whole community's obligations are to these children as an intervention principle it says when do we intervene and it's when parents fail to promote these basic interests that doesn't mean that the parents have to be the sole provider of basic interests we're allowed to have public schools which can provide for the education but the parents have to actually get the kid to the school so the benefit of a concept like constrained parental autonomy is giving a single principle for guidance and intervention gets rid of that gray zone and that gap where there's really a lot of disagreement so it basically says parents are allowed to make decisions that are good enough and only intervene when they cross the threshold of abuse and neglect and by allowing that it acknowledges that if you have more than one child doing what's best for one child isn't necessarily what's best for the other it also acknowledges that within families sometimes we make compromises and sometimes as long as we're not threatening or compromising the child's basic interests parents are allowed to take their own interests into account so I'm going to skip this slide and just get to that so the area labeled good enough is this gap between best interests and abuse and so basically what I've tried to show is that in a sense this prong three basically incorporates best interest good enough acknowledges that not all the decision that parents make may be determined as best by a third party but I would also want to put a caveat on that and that is healthcare providers when we think of what's in a child's best interest we're really focused on what's in a child's medical best interest and parents have to think about what's in their child's best interest what are the child's basic interests and needs all things considered so they have to consider a lot of other factors and just the child's medical they're going to raise their child in a certain culture in a certain religious beliefs and and things of that sort which need to be acknowledged as both good for the child as well as good for the family and that's why we talk about his own of family privacy here in the United States and so best interest and good enough is all about providing for the child's basic role see an interest and when we hit below that we're really talking about abuse and neglect so back to Charlie guard so how does the best interest standard function then in pediatric decision-making in the UK versus the US so in the UK as I've tried to show you that best interest services both guidance and intervention so allows the courts and physicians to override so the lawyers for Charlie's parents wanted to argue that the appropriate threshold for the state to intervene was harm and they were it was pointed out to them that was rejected by the UK courts because the UK courts say our laws and regulations empower us to intervene when the health care providers think that of another treatment is better and so they thought that the health care providers treatment withdrawal was better than the parental request for either continued treatment or for transfer to the US and an attempt at an experimental treatment in contrast in the US we would only intervene if we thought the parents decision was causing harm much greater than benefit and fell below some threshold of abuse or neglect now some people may have and reading the stories and what Charlie's life was like some people in the US may have argued that the harms truly outweighed the benefit but many of us didn't and so in this country we would have respected the parents decision here's what the courts wrote in the UK some people may ask why the court has any function in this process why can the parents not make the decision on their own and the answer is that although the parents have parental responsibility overriding control is vested in the court exercising its independent and objective judgment and the child's best interest wow right I mean it just says that third parties know what's better for your child than you do so um so good enough isn't good enough in the UK that is the courts can override if they think they're making a better decision and so from that perspective the fact that the court said Charlie would be better off having the treatment withdrawn and having it either continued or experimental treatment it makes total sense that in that world the answer was treatment was withdrawn over the parent's objection and Charlie died but in the US we don't hold parents to that best interest we don't use it either as guidance or an intervention and I hope I've convinced you that we shouldn't but um why best interest is too stringent is that it particularly as an intervention principle would mean that we would we wouldn't be able to tolerate any deviation that the parents made from what is maximally good and as Rosevon Rhodes and Ian Holtzman wrote when it's your duty to do it is best for the patient anything else is a violation of duty and totally unacceptable leaving no room to compromise um so why do we or should we hold parents who have best interest guidance um and the answer is most of us have argued against it so Buchanan and Brock said no it's a regular little ideal but we really you know aspirational but we'll accept good enough I've actually argued that is and so has Erica Schulter and Erica's work has looked at we're not even an agreement on what we mean by what's in the child's best interest we're not even an agreement on what we mean by what's in a child's medical best interest because we'll have to then distinguish between do we put a lot of weight on short term versus long term interest do we focus solely on the child as an individual as an atomistic individual do we allow us to consider the child as a member of a family in a community so is it purely self-regarding interest or there are also other regarding interests and then how do you uh balance medical interest versus broader array of interests so Buchanan and Brock actually give four reasons why we should give parents a lot of leeway they argue parents care deeply about the child's welfare know them and their needs best and are better able to ensure that the decision serves their child's welfare they also point out that parents are the ones who are going to bear the most consequences of their choices then the ones who are going to be responsible for raising the child they also talk about the right of parents within limits to raise children according to their own values something that our supreme court has affirmed on multiple occasions and finally they talk about the family as a valuable institution and in order to preserve it it requires some degree of freedom and privacy to make decisions about the welfare of those members who can't make decisions for themselves i i actually think these are four compelling arguments i actually add a fifth which is to allow parents to make intrafamilial trade-offs provided they don't sacrifice the basic interests of any one child's needs and that's actually discussed in Buchanan and Brock's book even if they don't articulate it for example they argue why can a child serve as a bone marrow donor to a minor sibling and the answer being that again um renewable um there's some pain involved but it's a relatively safe procedure to get a bone marrow transplant and yet it's not in the donors necessarily in the donor's medical best interest but again it allows for intrafamilial trade-offs provided we're not harming the basic needs and interests of a child member so a kidney is a step too far but bone marrow replenishable renewable uh tissue would be acceptable so why best interest fails because we can't agree on what interests or which interests and um so had charlie been in an icu in the u.s basically if he'd been at colombia dr michio herano may have offered the treatment and we would have been done if he'd been in any other hospital we would have transferred him that's even true if he'd been in texas which which has the texas advance directive act which says that doctors um giving a family notice um in 10 days can withdraw treatment over their request this family had already done their research they knew they could have called colombia and the child would have been transferred and according to the news reports at least herano had said that his hospital would accept him as a transfer so um it's interesting though because one of the other things that didn't get mentioned in the newspaper articles is that herano has a our irb protocol a research protocol to study mitochondrial depletion syndrome and those with the uh muscle only variant the tk2 it wouldn't have actually included charlie the rrm2b so they would have either had to have get an fd exception or um to to try this in a trial to didn't meet the criteria for a research study um and and basically offering it instead of in the research study just as a compassionate use but again i truly believe that a charlie been here in the u.s he would have ended up at colombia and getting the treatment whether under irb protocol or under compassionate use so who should decide for charlie and what's in charlie's best interest in the uk the answer is the courts in the u.s it's going to be the parents what role for the health care teams in the u k if you refer to the courts if you believe that your decision is better than the parents in the u.s we transfer all if we can find a physician who is willing to treat to respect the parents determination of what's in their child's quote unquote best interest on what standard is best interest calculations based as i've tried to show you the courts as well as their laws talk about an objective best interest where here we talk about subjective and if it's objective then it makes sense that it can be a third party like the courts versus objective where we're going to um defer to parental decision making so is best interest a guidance principle an intervention principle or both um in the uk it's both in the u.s we claim its guidance but i would actually say that in reality it's neither that we really hold at most to a good enough standard so um again here's where we draw the line we distinguish between what's best and good enough and we draw a line at abuse and neglect we intervene at the between the red and the yellow in the uk they intervene between the green and the yellow um so thank you very much and i'll take questions wow i've silenced that lanie i couldn't help but thinking how far we've come from charlie guard since um the first baby doe who shall survive at john's hopkins for those not familiar in the audience in the 1960s a baby's born at john's hopkins has duodenal atresia um the surgeon is alex haller the resident is norm frost the intern is bill bartholomew bill bartholomew is the award in his honor at the american academy of pediatrics for bioethics norm frost has been given a mclain ward in the last two years was a center speaker here what happened in that baby doe case is that the surgeon wanted to operate and the neonatologist wanted to operate but the parents talked to their catholic priest and he said that was heroic you don't have to operate and all the caregivers including the nurses watched as this baby took over two weeks to die and cook who was the chief of pediatrics went to the bishop of baltimore and said um you know father the local priest is misinformed children with down syndrome even though they have disabilities they have a life they do stuff and the bishop of baltimore at that time this is in the 1960s said children with down syndrome don't have souls they go to limbo it's not the catholic church's business so then cook went to the attorney general of the state of maryland and he said look there's a vulnerable population they should have somebody in their interest before the court the attorney general of the state of maryland said children with down syndrome are imbeciles imbeciles have no standing before the law it's not the court's business the parents can do whatever they want and you know the real thing that this taught me is the misguided information that all parties have and you were so good to point out both gaps in what was real for charlie guard and what wasn't but as you think about these things and the ideology at times whether we think of dc fs s or we think of how our supreme court might view certain things what do you propose so that physicians can advocate and be part of informed discussions on vulnerable populations so that's a huge question my thanks for asking and thanks for sharing i mean so the world has changed a lot since the first baby dough case um it's interesting because in some ways the the parents were also influenced by their own private pediatrician who would have in the in that time period would have recommended to not do anything because having a child with developmental disabilities would be harmful to their marriage would be harmful to their other children so our attitude about disability has incredibly improved over the time we've had lots of legislation as well as a change in understanding of the value of these individuals and that intellectual differences aren't necessarily a bad thing so we've we've moved a long way um we've also moved though also a long way in the rights of parents to make the final decision right um even though eventually the baby dough laws in the case of baby dough we we actually respected the parents decision we then went through a whole series of years under the baby dough legislation of Reagan where these parents were overridden all the time in order to do quote what's best so we've actually seen a pendulum swing from the parents actually being able to make that decision in 1972 versus throughout the 1980s where the health care team was making those decisions and we're moving back towards the parents so I think that it's not sort of just been a continuum it's actually been a pendulum swing back to respecting parents which is the whole notion that Mark Siegler wrote about in the 1980s of shared decision making that was actually written even by Raven Duff and Campbell back in their 1970s article about talking about shared decision making so it's been a concept in pediatrics even longer than it has been in adult medicine so I think that's one of the biggest changes and that I think we've really moved at least in this country to a much more shared decision making model yet you do have the Texas Advanced Directive Act which applies to adults and children I get it but it has been used against children many times where the teams have decided that this child's life is not worth living and that they should have the authority to make that decision regardless of the parents so the pendulum is swinging but I'm not sure where it's going at this moment in our time does that start to answer some of your thoughts the drugs walk them off and make sure they stay under my watch and the opposite under treatment where you know you can do whatever you want if you want to do along school if you want to do alternative medications if you want to do things that can have harm for your child you're absolutely right um so we we are in a state of polarization and you've described it beautifully and I wish I had a solution great talk and I totally agree with you one of the things I'm seeing in critical care medicine and I'd love an answer to the adult world has written policies at the national level that fundamentally allow withdrawal of life support it's geared to adults um when they're not using the word futility anymore but when inappropriate treatment yes and the pediatric critical care world wants to be able to adopt these and doesn't understand at least when they talk to me and I go no we're not adopting these and I think you summed it up well but how do we deal with this in the United States moving forward also it's interesting they did come out with this statement it was actually signed by multiple medical professional organizations about inappropriate treatment which as you pointed out correctly really is just futility in in different language um so it's interesting because you then also have like TADA right the Texas Advanced Directive Act which says that even though the teams want to there's they created a process by which if there's disagreement at least we should be able to transfer the child and so I guess one of the things I would love to know is what type of data do we have about how often that policy is actually being implemented I mean it really is sounding much more like the UK that we know what's best but it's actually circumventing the need to go to court it's basically saying we the doctors know best and I would argue that's a pretty dangerous precedent to have set so I would love to know how often it's being used and I haven't seen any data about it in the literature hey Dr. Ross um the residents a few a week or two ago got our peri-variability lecture and so talking about our newborns in the NICU that are born like between 22 and 24 weeks and I was just curious with the um like in the UK like how they would sort of approach that and because one of the things we talked about is how it is very hard to give even expectations or of or even tell a family what's going to happen because it just so variable it just depends when they deliver right so um our ability to prognosticate isn't very good um in that time period so in the UK they have a just a very strict deadline that any child born below 24 weeks they do not resuscitate period and then everyone above that they resuscitate regardless of what anybody says so um in some ways when you make policies like that it becomes easy because it's just a sharp line the only problem with that is I don't know how they're so certain that that baby is 23 and 6 and not 24 and 0 um most of us unless we went through IVF really can't say the exact date of conception of the of the embryo so I think these bright lines um have a lot of problems in and of themselves and I think in negotiation conversation between the families as we do here with shared decision making is the appropriate answer I mean these are they're complicated cases because it's going to be a long even in the best of circumstances it's going to be a long road and they're going to be complications along the way and so I think shared decision making so that people once you start on one path doesn't mean that you're just starting to continue on that same path I want I wanted to ask a question that sort of takes a different ethical perspective on it which is an outcomes oriented one do we do we know anything about what the outcomes are of these sort of good enough decisions you know when they're resolved either way when you know they might have made a decision to do more and they were forced to do less or or vice versa and does that play any role in thinking about the ethics of this situation yeah so you know parents have different parenting styles and some of them are probably better than others and we don't what type of outcome data do we have on anything in pediatrics and how we raise our kids right so the kid has an ear infection and it's 70 likely to be viral and some parents say then I want antibiotics anyway for the 30% and some parents say well if it's most likely viral let's watch and wait right what's best so if the outcome is is the child gets better what does it mean so the moral distress that individuals experience no actually the moral distress of the parents who are the healthcare providers okay okay no I was gonna actually agree with you that I think that if we're gonna talk about moral distress I mean it's the I mean Brock and Buchanan said it right the parents are the ones who are going to deal with the consequences of these decisions so the fact that we have moral distress for a week or a month while we're on service I don't have as much empathy as I do to the family who have to make the decisions about what type of life they think is good enough for their child and so I'm not sure which way we increase or decrease moral distress by respecting their decisions I think at least in chair decision making one of the things we're offering families is that we're taking their path with them rather than sort of abandoning them them to their own decision making so I think hopefully that would reduce some moral distress and yet sometimes what we mean by shared decision making is we're going to bludgeon you until you agree with us and that's really problematic the consequences of the baby doke case at Hopkins Cook resigned this chair pediatrics did a sabbatical in ethics at Harvard sat on the commission for the Belmont report and founded the Georgetown School of Ethics by encouraging the Kennedys to do it and to give the affirm that bioethics matters and we have to have forums for these issues Bartholomew as you know became a leading bioethicist as did Norman Frost that's how they handled their moral distress yes in a very patient-centric way I would add yes I agree with you that child bears that along with the parents um since the child can't speak for themselves the child is sort of dependent on the parent acting in their interest right and and so the whole focus here has always been that the child's interest should be primary not to ignore the parent's interest the child bears it but remember for a parent who decides against treatment the child in a sense never has a future in which decide whether life was better or worse than non-life right it's the parents who are making that type of decision in both good and bad ways right okay so the question is so what would be the value of assigning to every child the guardian ed light them I think it would be very intrusive within the family I think we all make decisions as parents some of which we even later regret and but yet in the end we value the intimacy of the family that there should be some protection from state intervention in all decisions I mean imagine if a third party could turn to you and say I'm not sure that the school you've picked for your child is the right one or if that religion is a minority religion is being stigmatized at this time in the United States maybe you shouldn't raise your child in that religion we wouldn't want somebody to necessarily advocate so so this gets into the question so the question was for those who might not have heard in Dudley what about with life and death and this gets into the question is is are there states worse than death for a child and that's a very subjective preference there are some of us who do believe that there are states of life that are worse than death but there are others who believe that any biological existence is good and I'm not sure how we would ever come to consensus on that which is why then I have to just leave it to the parents now sometimes the parents have a very high bar about what's the quality of life and that becomes problematic too and that's why when we think that the parents are being harmful or abusive we do get third parties but in that good enough range I'm just not sure I want the state having any say so I was wondering today when you did your presentation you talked of course about the child the parent the medical provider and the courts as decision maker but for example right now in front of the Illinois house there's a bill to change or define what is medical neglect and abuse which means then that it's a legislative process that's now going through to make some of these kinds of decisions and I was wondering if you could reflect in terms of your framework how you think about a legislative process for that kind of decision making so I have to hear more I mean what are they trying to set standards and what is abuse and neglect or are they trying to say what the process will look like when a hospital calls on abuse or neglect well it's house bill 4769 and what they're trying to do is is define what is considered neglect or abuse so what they're trying to do is set some lines some kind of threshold or yeah some threshold right so it seems to me that's what the state ought to do right they should create some threshold so that we have more of a an objective standard of what's abuse and neglect so that we don't use it in a biased and discriminatory way which unfortunately we tend to do right when we look at the date of when we call DCSF it's not just the random sample so I think it would be good if we could agree but the difficulty is going to be in defining all those terms of course but it also means that it opens it even more so to a political process that is is based on factors beyond the type of perhaps objective decision making yeah so it raises an interesting question to what extent is a determination of abuse and neglect of purely medical decision and to what extent it includes values and I guess I'm one to believe that there are values that are involved in every single medical decision and so maybe that should be a broader conversation whether the political realm is the right place or whether it should be a larger society community engagement deliberative democracy approach I would be fine with but I do think that people other than the healthcare community needs to be involved in that determination thank you I know it's past one o'clock so for the residents who need to go back to the wards please feel free to leave where everyone can leave oh no yeah right right well well you're right because I'm basically you know anything that goes to an ethics committee or goes to just a trial court is never going to be publicized right it's only going to be when it gets sensationalized or it gets appealed and then you'll get a written opinion so you're right I don't know how you would collect that data not without a national database of everything right and that raises huge privacy issues and in a healthcare patchwork we're just not going to see that really thank you so much thank you all