Neonatal Resuscitation: What Makes the Gray Zone Gray?

Dr. John Lantos

Thank you very much. It's great to be here, great to be in Seattle. We came out a day early because people said the hiking was great. And so yesterday, we decided to do a hike up to Mount Pilchuck, which was in the Cascades. And everybody said, you know, the views are fabulous. And so we hiked up the 2,200 feet and could barely see the photographs of the views.

Dr. John Lantos

We're in the little cabin at the top. So thanks for scheduling this during the good season here in Seattle. Actually, if it was sunny, I'd feel a little cheated. I mean, false advertising, right? You want to feel the gloom.

Dr. John Lantos

And when we planned this panel, I offered to give a talk that is actually a little different than the one I'm about to give. And actually, after watching Norm's experience with the slides, I'm glad I did, because the talk I'm going to give has no slides. I was going to show the empiric slides that are in your handouts about different ways of measuring outcomes for tiny preemies with congenital anomalies. And I was going to show how empiric data could be used to define gray zones along different quantitative axes and how we could look at a gray zone as a measure of survival rates or a gray zone as a measure of rates of disability among survivors or do cost effectiveness analyses to determine where the gray zone is and measure it in dollars per quality adjusted life year. I was going to show how advances in neonatology or shifts in cultural attitudes like the ones Norm was talking about uh... led to shifts in uh... gray zones at least in some cases but not in others and have those cool data from all those surveys that twenty two percent of doctors think this and thirty eight percent of doctors think that there's differences between countries and there's differences within countries and you get different answers from different ethics committees and sort of map out in a descriptive almost epidemiologic way where all these differences lie But I came to see that these sorts of arguments define gray zones within a certain paradigm, within a way of thinking about what a gray zone is. And they work to the extent that they work only when everybody agrees on the parameters and the methods by which you make those quantitative assessments. And within the paradigm, people may disagree about the threshold, where to set the bar. Does it have to be below 50% survival or 30% or 10%? Does it have to be a higher percent of kids with disability or some measure of disability that counts as severe? But you have to agree on the criteria before you can agree on the conclusion. And I'd still be happy to discuss those issues in the discussion period. And I hope the sponsors aren't too upset that I don't give the talk I planned. realized that I set objectives based on that talk. And I'll get bad grades from you all, so I'll give you the answers. Participants will be able to compare international differences. They're different. Japan resuscitates more. Anglo-Saxons in the middle. Europe the least. Quantitate the relative importance of survival, disability, and cost. They're all important.

Dr. John Lantos

And now I'm going to suggest ways in which we might operationalize the gray zone. I changed the discussion because of a couple of recent cases that I've had the opportunity to participate in discussions about. One, a clinical case that came to an ethics committee, and one more, a policy case that I'm sure you'll recognize when I get to it. And these got me thinking more about the conceptual issues surrounding the gray zone. And I think the discussions are interrelated. I hope you see that too. The case. that got me thinking about this was a case that I presented to the group of neonatologists at Children's Mercy in Kansas City. And I'm working on a paper about it. It was a case of a baby with trisomy 18 who had a big VSD and needed surgery for the heart. And medical management had been tried for his heart failure, and it failed. The baby was going into worsening congestive heart failure. operation to fix the VSD, everybody agreed, was relatively routine and straightforward. The parents had gotten the diagnosis of trisomy 18 prenatally and had chosen to continue the pregnancy, not apparently out of any deeper identified religious beliefs. They said it wasn't

Dr. John Lantos

based on their religious beliefs, but more out of an intuitive sense that Life was good and baby's lives were good and this was their baby and they wanted everything done to save their baby's life. They loved her in spite of her limitations. So I asked the group of neonatologists whether the heart surgery to fix the VSD ought to be offered to this family. And some of the doctors said immediately, dramatically and unambiguously, it should not be offered. They seemed quite sure of themselves, even a little bit strident, and they framed their arguments in terms of moral principles and moral absolutes. It would be against the baby's best interests, they said. Surgery would only be for the parents, not for the baby. It would be Prolonging dying it would be a waste of societal resources all those parameters that we use to define gray zones It would violate their professional integrity somebody said this is not what I went into medicine to do

Dr. John Lantos

Now we know and they knew that many neonatologists and surgeons many of their professional colleagues would offer the surgery and with this very group. We'd done a recent journal club where we looked at a survey of neonatologists who said half would offer the surgery, half wouldn't. So they knew there was disagreement, but they still felt strongly about their own opinions. In fact, other doctors in the room said that they would offer the surgery. And interestingly, this group was a little more apologetic. They said, Yeah, yeah, I'd offer it. I wouldn't feel good about it. But it wouldn't really bother me if the parents chose surgery. I mean, in the end, it's their decision. Who am I, they asked, to judge. So the group was split almost right down the middle, half would, half wouldn't, the very definition of a gray zone. We could have taken a vote, thumbs up or thumbs down for this poor little baby, and somebody would have won five to four.

Dr. John Lantos

I was less interested in the outcome than I was in the structure of the arguments on each side. The people who were against the surgery were much more passionate and principled. They seemed to see themselves as courageous in their refusal to offer the surgery. The people who were for the surgery were the opposite. They did not have a proud principle to extol. Put another way, their principle was to have no principle, to have no moral conviction about what was right or wrong, to be profoundly uncertain about their right to have an opinion about what was right. And it struck me that this is often the moral structure of gray zone arguments, or perhaps more accurately, there are two kinds of gray zone arguments. We mean two different things when we talk about gray zones. One might be called a kind of personal gray zone. The other might be called a cultural or political gray zone. For the personal ones, we don't really care so much what the decision symbolizes. Personal gray zone decisions are important for the people directly involved, particularly the parents, but also the doctors and nurses, but not beyond that. And most clinical decisions, in a sense, are in this kind of personal gray zone. We're often a little bit uncertain. We talk to people. We offer choices. People make a choice. Sometimes it's not the choice we would have picked, but it doesn't matter. We're not generalizing from this. We have no intention of writing an article about it. We don't want to take the parents to court or to set some sort of broad precedent based on these kinds of gray zones. We're all uncertain and the decision that is taken ends, or the controversy ends with the decision.

Dr. John Lantos

For cultural gray zones, something larger is at stake. The decision has ramifications. To make a certain choice entails moral commitments that go beyond the particular case. Such gray zones arise when some people have a strong conviction about what is right, and other people don't see it as important in that sense. What they're disagreeing about is not just the decision or the case, but about the symbolic resonances of the case. So another such conflict that illustrates this, and one that has little to do with neonatology per se, although it does involve but was probably the biggest controversy that has ever embroiled the American Academy of Pediatrics Committee on Bioethics. And it followed their recent statement on female genital cutting. In this case, even the words used to identify the issue trigger moral controversy. The Academy's prior statement on this topic was called female genital mutilation. The revised statement shifted a bit and talked about The most controversial paragraph of the new statement suggested that in some cases, pediatricians might work with and be tolerant of parents whose cultural beliefs and commitments demanded a surgical procedure on their daughter's genitalia. One way they could do that, the committee suggested, would be by offering instead of the full

Dr. John Lantos

traditional procedure, simply a, quote, ritual nick of the labia. It likened this to other widely accepted non-therapeutic procedures such as male circumcision or ear piercing. It argued that for some parents, some sort of procedures like this might be thought necessary for cultural reasons. And for such parents, the procedure would likely be done less safely if it was done by traditional methods rather than by pediatricians. Therefore, the argument went, pediatricians should offer to do it, even if they didn't like it, for the sake of the child's interests. Offering such a ritual nick, they wrote, may save some girls from undergoing disfiguring and life-threatening procedures in their native countries, unquote. It may also, the statement said, build trust. Of course, the committee stressed, quote, parental decision-making is not without limits and pediatricians must always resist decisions that are likely to cause harm to children. Now, the statement led to a firestorm of criticism and was eventually retracted. Interestingly though, the criticism came after the statement went through the long and arduous process of review by committee after committee and the leadership forum and the leadership of the academy. So that, at least in the process of putting it together, many people had looked at it and thought, we can stand behind that, that's okay. But once it was opened up to the larger cultural discussion, the criticism became so intense that they backed off and now if you go to the website it says this page is no longer operable.

Dr. John Lantos

But the arguments that were made, in a way, had the same structure as those in the Trisomy 18 case. On the one side, people passionately put forward moral absolutes. This is wrong. There's no room for compromise. Any genital cutting is unambiguously wrong in a way that ought not to even be dignified with an attempt at a rational argument. On the other side were people who seemed wishy-washy, morally relativistic. These folks seem to be saying, in essence, different strokes for different folks. Who are we to judge? Let's try to be tolerant of cultural differences. To be fair, the tolerance was not infinitely tolerant. They had their moral absolutes as well, clitorectomy, for example, but they saw a gray zone around the ritual nick where other people saw only black and white.

Dr. John Lantos

Now these cultural gray zones then are domains where there are deep disagreements not just about what is or is not the right thing to do, but even about whether it's morally permissible to see grayness. The grayest of gray zones are the ones in which some people see gray and others deny the moral legitimacy of the people who see anything but black and white. They're usually zones in which fundamental cultural values clash, but, and this is important, the very phrase cultural values suggests just the sort of relativism that undergirds the conflict in the first place. To the extent that we have any uncompromising moral commitments, we are able to have those uncompromising moral commitments precisely because we don't see them as a cultural value. We see them instead as being beyond culture, beyond discussion, almost universal. They're only possible if we believe in transcultural universal moral norms, moral norms that are so basic and fundamental that even to dignify them with an argued moral justification is immoral. We all have them. We generally don't discuss, let's talk about the pros and cons of burning widows. Let's talk about cannibalism. Who's in favor? Make a moral argument. Trafficking child sex workers. Pros and cons.

Dr. John Lantos

Clitorectomy. The clash occurs when others attempt to moderate claims by offering a view in which a culture becomes more tolerant and accepting of what had not before been deemed acceptable. culturally acceptable. There may be other gray zones, the trivial ones in which people agree to disagree, but the ones that are interesting to bioethics, I think, are the ones that really matter in this fundamental way to people who are engaged in the discussion. The controversy over the ritual nick is a disagreement that really matters. Those who oppose female genital mutilation think that it is not only wrong but deeply, unalterably, fundamentally, criminally wrong. Some disagreements in neonatology are the same. Those who think that all otherwise healthy 25-weekers ought to be saved think that those who allow parents to refuse treatment are outside the bounds of rational discourse about morality. If you don't see that with 25-weekers, think of it with 26 or 27. Everybody at some point

Dr. John Lantos

It seems crosses the threshold where rational discussion is no longer permissible, and anybody who tries to make a rational argument is themselves immoral. In both cases, the threshold for preemies and the threshold for, say, surgical genital alteration, the ones imbued with moral passion see the moral relativism of the others as emblematic of a worldview that is itself deeply flawed. It is not the ritual nick itself that is the object of the attack. The ritual nick is a powerful symbol for the vast and complex cultural, religious, and economic systems that mutilate, abuse, and disempower women, an evil so powerful that it should brook no compromise, an evil about which the very notion of compromise is anathema. Now this sort of uncompromising moral language is the sort of language that we usually associate with fundamentalisms of one sort or another. A good example of such language coming from a proud and unapologetic fundamentalist, Tris Englehart, can be found in a recent provocatively entitled paper that he wrote called moral knowledge, some reflections on moral controversies, incompatible moral epistemologies, and the culture wars.

Dr. John Lantos

He begins by noting, quote, a striking feature of contemporary debates about the morality of abortion is that the disagreements cut so deeply, unquote. He then suggests that they cut so deeply because they were about a deep and fundamental way of thinking about the world and about what it means to think about morality. A secular culture, he notes, is framed by an understanding of moral rationality radically at odds with that of an authentic Christianity, unquote. This understanding, he suggests, can never find compromise and shouldn't with an understanding based on what he calls a proper Christian understanding of the world and vice versa. a proper Christian understanding of the world, he argues, should never find compromise on fundamental issues with a secular understanding of the world. At stake, he writes, are matters that reach beyond conceptual analysis and beyond the assessment of arguments. We need, he suggests, quote, a reexamination of moral epistemology and the source of moral premises. Go there and you can't have the sort of argument I'd originally planned to talk about, an argument in which we all agree that there ought to be some sort of threshold for survival or quality of life or cost effectiveness that defines the gray zone and the problem becomes collecting the data that will allow us to define precisely where that threshold lies in our mutually agreed upon predefined terms. One sort of argument is one that starts with these mutually agreed upon premises. The other is about the premises, about the starting point, about the basis of what it means to have an argument or a discussion that we might call moral. Again, I'm not interested here in whether the Christian perspective is the right perspective any more than I am in which group of neonatologists is right about trisomy 18 or which AAP faction is right about the ritual nick. I'm interested instead in the conceptual structure of gray zones. And because I think understanding the conceptual structure of gray zones allows us to begin to understand what it is that makes some of them shift and some of them stay stubbornly where they are. One more conceptual example, and then I'll show how this plays out with a clinical example, and then I'll finish up. One can see the structure of this argument not just in the writings of Christian fundamentalists like Englehart, but also in the writings of secularists as well. Tony Jute, who's a political commentator, wrote a recent book about politics in the US and Europe that he calls Ill Fares the Land. And he talks about the differences between liberals and social democrats. A liberal, he notes, is quote, someone who opposes interference in the affairs of others, who is tolerant of dissenting attitudes and unconventional behaviors. Liberals, he goes on, have historically favored keeping other people out of our lives, leaving individuals the maximum space in which to live and flourish as they choose. Social Democrats, Jude writes by contrast, believe in the possibility and the virtue of collective action, for the collective good. The classic liberal may have a personal idea of the good, but radically rejects the notion that the state should endorse any collective idea of the good, except that which promotes and maximizes individual freedom. The social democrat, by contrast, argues for particular ideas of the good, and sees the interference with individual liberty as not only tolerable but preferable when harnessed to these larger morally defensible social goals. For a recent example of this disagreement playing out on the national political stage in the United States, see Rand Paul's discussion of the Civil Rights Act and the question of whether government should compel private establishments like restaurants to serve people regardless of their race. A social democrat, or what we in America today would call a liberal, would say, of course they should be compelled. The government has an idea of the good that includes certain restrictions on what private restaurateurs can do. A classic liberal, in Jude's sense, what we in America today would call a libertarian, like Rand Paul, would say, of course not. A private establishment should be left alone from these sorts of restrictions and there should be black only restaurants and white only restaurants and mixed restaurants and let the market take care of it and we'd have a better society. Rand Paul then sees a gray zone

Dr. John Lantos

and tried painfully to explain to Rachel Maddow why it seemed gray and Rachel found him unspeakably immoral. views she expressed with that little arching eyebrow and the half smirk that she uses to say, he's not one of us.

Dr. John Lantos

And she found his political views intolerable precisely because he saw a gray zone here. Pediatric bioethics. In fact, all ethics regarding the care of and nurture of children is interesting in this context precisely because children are so under-theorized by classic modern liberal political philosophy, and by bioethics. Children do not act autonomously, so they can't demand the sorts of freedom from interference that grounds the liberals' argument. Decisions must be made for them. They're fundamentally then part of a social democratic way of looking at the world, and a tepid liberalism imagines that parents' decisions about and for their children deserve the same sort of respect and protection as decisions that individuals make for themselves. But this quickly runs into incoherence. Parents' freedom deserves respect only to the extent that it doesn't interfere too much or too deeply with children's nascent developing freedom. Children are not chattel. They have a right to be allowed to develop into moral agents. But confusions about the commitments and implications of liberal political theory is precisely what puzzled the ACLU, for example, who couldn't decide which side to take in the Baby Doe conflict that Norm was talking about. Should they be on the side of the parents and their civil liberties to make decisions about their family consistent with their values, or should they be on the side of the civil liberties of the baby

Dr. John Lantos

not be denied a life-saving surgery. The confusion about babies was reflected in the media discussions where journals with traditional political alignments that differ on most issues like the New York Times and the Wall Street Journal were on the same side in the Baby Doe controversy in favor of the parents' rights to refuse treatment, whereas Journals at the extreme, like The Nation on the left and The National Review on the right, argued in favor of the baby against the parents, The Nation as a disability rights case, and The National Review as a right to life case.

Dr. John Lantos

Now as you know, and as Norm talked about, doctors used to disagree about whether to operate on babies with Down syndrome, and it's interesting that this is a perfect example of a situation in which the gray zone has shifted, has changed. These used to be private decisions that parents were allowed to make. Doctors sat down with parents. They discussed it. Parents could choose surgery or not. If you look at old surgery textbooks or articles in surgery journals, series of cases of duodenal atresia and their outcomes, they'll have a few asterisks by some of the cases and say not operated on Down syndrome or mongolism. And there's no discussion of this as an ethical problem. It was private. Then people started to think maybe the law should change, or maybe this was against the law. In fact, Norm wrote one of the great articles explaining how many laws it was actually against. I believe there were 12 and counting that people were potentially liable for, which frightened Duff and Campbell, who were making these sorts of decisions and had published a paper about it. And they defiantly concluded their paper by saying, if this is against the law, the law should be changed. They were prophetic in that the law was changed but not in the direction that they hoped it would go. What in 73 and 63 and 53 had been a gray zone became after 1983 completely black and white by edict of the federal government non-treatment of babies with Down syndrome and duodenal atresia was taken out of the gray zone, out of the realm of personal moral decision making and made mandatory. We became fundamentalists. on this issue intolerant of moral diversity. Similar things happened with respect to chemotherapy for leukemia.

Dr. John Lantos

At the same time, trisomy 18 was elevated to gray zone status. Now other domains remain a little gray. Hypoplastic left heart syndrome is a good example. I'm not aware of any legal case that that specifically addresses the issues raised by decisions about surgery or comfort care for hypoplastic left heart syndrome. Some centers continue to offer comfort care. At other centers, this is not offered. In those centers, some doctors say they would take parents to court if they refuse. Other doctors say they would not take parents to court if they refuse. We don't know what a court would say if somebody took them to court. But for those on both sides of the debate, the outlines of the controversy are similar to this classic gray zone structure. Parental decision making is not without limits. Pediatricians must always resist decisions that are likely to cause harm to children. But an interesting question is, why does the situation around hypoplastic left heart stay gray? in ways that the situation around Down syndrome did not. And that may be a topic for a different paper, but it turns out that it takes a rare combination of social, political, moral, and economic forces to bring particular gray zone issues out of the private realm and into the public realm. And it's usually a painful and divisive process that ends when the dust has settled with a shift in one direction or another. And I think this is an important feature of gray zones, which ultimately answers the fundamental question that they raise, which is to define for us the limits of our ability to live with moral ambiguity and to tolerate moral and cultural differences within a secular pluralist democracy. Thanks.