 John is now Professor of Pediatrics at the University of Missouri, Kansas City and Director of the Children's Mercy Hospital Bioethic Center. At Children's Mercy, John has been developing a new NIH-funded program in pediatric ethics and genomics. His talk today is based on his 30 years of experience as a clinical ethics consultant and will reflect on the ways that ethics consultations can help nudge us to new understandings of what is at stake in controversial cases. The title of John's talk today is What We Talk About When We Talk About Ethics. John Lantos. I'm wired. Yeah. Breathe. Right? In. We're stating. So I was recently invited to talk about ethics with the staff of a level three neonatal intensive care unit. They presented this case, a full term baby born by emergency C-section after a cord prolapse that caused prolonged anoxia. Initial pH was 6.7. She was intubated, resuscitated in the delivery room. Her apgar score remained at one for 10 minutes. Her prognosis, of course, was dismal. When doctors recommended a DNR order and the parents agreed, the doctors suggested a G-tube. The parents disagreed. They requested that fluid and nutrition be discontinued. The staff was smart. They knew the AAP guidelines. Some were familiar with church doctrine on withdrawing fluid and nutrition. They were used to taking care of dying babies. They had not before had a case where parents requested withdrawal of fluid and nutrition. All the choices were bad. Baby would either die of starvation or live with little or no cognitive awareness. Both options were legal. Reasonable people could disagree. The emotions in the room as they talked about the case were strong and discordant. Some felt that the parents had the right to make this decision. Others felt strongly that it was wrong to withhold fluid and nutrition from a baby and probably any other circumstances. One doctor said, it's like taking away a blanket. Would we leave the baby naked on the front steps? The case had taken place some months before our discussion and they had decided to respect the parents' wishes. The baby lingered in the NICU for 11 days. Some nurses had refused to care for the baby and their conscience-based requests were honored if they were assigned to other babies. Other nurses stepped up, some willingly, some grudgingly. Some staff members made disparaging comments about each other. The NICU was a sad and stressful place for those 11 days. One nurse said, what made it so hard was that it took so long when we stopped a ventilator babies die quickly. Another said, I didn't object to the parents' decision but why couldn't they take her home? Why did we have to take care of her? One of the nurses who had cared for the dying baby said it was difficult but also beautiful. She admired the parents' ability to stay with their baby, holding her and comforting her and was deeply moved by the parents' devotion. Then the conversation wound down and the group turned expectantly to the visiting bioethicist. Like David, I wasn't sure where to start. We could have focused on futility or quality of life or parental autonomy. We could have focused on moral distress or talked about conscience clauses. We could have tried to figure out the difference between treatment, withdrawal, terminal sedation and euthanasia. There were lots of possible entry points, but what interested me more than those was the way these particular people in this particular room talked about what was at stake for them as individuals and as a group. In talking about the case, everybody started with a moral intuition, a kind of gut feeling about what was right or wrong. When challenged about the validity of their gut feelings or their intuitions, some of them tried to make moral claims of one sort or another. Some explained that we should stop feeding because the parents have the right to make that decision. Others said we should not stop feeding because the baby had a basic right to fluid and nutrition. But these arguments and sort of moral claims that people were making didn't lead anybody to change their mind. If anything, this way of talking about ethics simply heightened the disagreements. This approach reflected Alistair McIntyre's despair about the state of contemporary moral philosophy. After virtue, he writes, the most striking feature of contemporary moral utterance is that so much of it is used to express disagreements and this most striking feature of the debates in which these disagreements are expressed is their interminable character. There seems to be no rational way of securing moral agreement in our culture. Moral philosophers today, he concludes, can only offer rival and incompatible accounts of the good, utilitarians competing with Kantians and both with contractarians so that moral judgments become essentially contestable. They do not and cannot engage one another's first premises. Human arguments will never convince a utilitarian. Protestant arguments mean nothing to a Buddhist. In making moral judgments then, we all pick and choose among rival philosophies, rival religions, rival professional societies, creating our own amalgams. On some issues, we go with a professional society statement. On others, we go with the Supreme Court or the Catholic Church or the New York Times and we cite these authorities as determinative when we agree with them and dismiss them as dastardly when we do not. This leads to a deeper question. If we don't get our moral intuitions from philosophy, then where do they come from? Carla Elliott notes that while ordinary people pay little attention to theories when they make their moral decisions, that nevertheless our moral decisions are influenced by the theories that are embedded in the culture in which we were raised. I myself, Elliott writes, refer to no systematic moral theories or doctrines in making moral judgments but I have no illusions that these judgments are independent of the fact that I grew up as a Presbyterian in South Carolina. So one possible explanation of the origin of our moral intuitions is that they come from the way we were raised. But if that is true, it leads to a more disturbing set of questions. If our beliefs come from the ways that we were raised, then we are not free to choose our fundamental beliefs. In what sense, then, can we be thought of as autonomous? Lisik Kolokowski played with such questions in a somewhat tongue-in-cheek essay that he wrote in this book, Modernity on Endless Trial. The essay was called From Truth to Truth. In the essay, he proposes to create something that he calls a conversion agency. The conversion agency would help people change their most deeply held beliefs. Its advertising slogan would be, we convert from anything to anything. At Kolokowski's conversion agency, one could be turned into a pious Jew, a committed Maoist or a secular hedonist. The fees would be determined according to the degree of difficulty of the conversion. It's a lot easier, he claims, to make someone into a Unitarian than into a Sufi mystic. Now Kolokowski's ironic essay raises an important non-ironic question. Can we change our most deeply held beliefs? Can an American Christian ever really become a Tibetan Buddhist? This fundamental question about character and identity, about those aspects of ourselves that make us who we are, raise the question of whether there's something at the core, something immutable, something that can't change. And it's the question at the heart of the popular television series, Homeland, in which the suspense is about the main character, Brody. And whether he is ultimately truly an American or whether he has in fact been turned and become an agent of El Qaeda, the El Qaeda version. Can anybody change that much? Now, psychologist Jonathan Haight suggests that with regard to morality, we are not so malleable. Instead, he suggests that our moral intuitions are biologically hardwired into us. He claims that all people, and in fact many mammals, are built to feel certain emotions in certain situations that become the basis of moral systems. We feel fear in the face of vulnerability, fear and vulnerability in the face of a predator, anger when we're hurt or insulted, love for our offspring, altruistic desires to help people as long as they're part of our in-group, when they're in trouble, etc. These biologically based psychological responses become the basis of slightly different but non-arbitrary and, Haight argues, fundamentally constrained moral systems. Note, he is not claiming that these lead to universal, identical moral beliefs. He makes the analogy between moral intuitions and taste. We all have the same taste buds. They lead everybody to enjoy certain flavors, things that are sweet, salty, bitter, savory, to reject certain other flavors or smells. Those are hardwired into us, but from these basic biologic building blocks, we don't all develop identical preferences for food. Instead, we generally develop taste for the foods that we grew up with, the foods of our culture. By this argument, taste, like morality, is both universal and particularistic. It's both culture bound and biologically predetermined. Everybody likes spices, but not everybody likes the same spices. Everybody is repulsed by cruelty, but everybody defines cruelty slightly differently. Some cultures find punishment by whipping to be acceptable and appropriate, but would find long-term solitary confinement inhumane. Other cultures come to different conclusions. To Haight, it makes no more sense to ask whether one moral system is superior to another than it does to ask whether one cuisine is somehow intrinsically better than another. Now, I happen to like Italian food. Some people prefer German food. I think they're weird, but I wouldn't say they're wrong. Some people like even weirder things. On Sardinia, apparently a delicacy is this cheese that has live maggots inside. In the Philippines, one of the street foods that people like to eat is a little live duck, embryo. These things are perhaps weird, but are they wrong? By this account, our primal moral responses are deeply ingrained but not immutable. Our tastes change in food and in morality and evidence of that sort of change is all around us. It used to be okay, for example, to smoke in your hotel room, but you had to go out into the alley to buy pornography. Now, you have to go. Now, we've reversed that. One might look at issues like polygamy or slavery, gambling, gay marriage, and see moral adaptation and re-evaluation at work. So this leads to the biggest question of all. How do our ideas about right or wrong, our moral tastes, change? How do we know when they should? When should we resist a moral innovation and stick to our principles? Or when should we turn? I think that the only way to answer that question is by talking to each other about ethics, talking out loud, telling each other the moral story of our lives as it comes to bear on a particular problem or a particular case. Now, the title of this paper is an homage to Raymond Carver's short story of what we talk about when we talk about love. In Carver's story, two couples, Mel and Terry, who were married at Nick and Laura, who were married, are drinking together on a summer afternoon and talking about love. Terry's first husband, Ed, she tells the group, was physically abusive. Terry tells what that was like. She says, he beat me up one night. He dragged me around the living room by my ankles. He kept saying, I love you. I love you, you bitch. He went on dragging me around the living room. My head kept knocking on things. Terry looked around the table. What do you do with a love like that? She left him. And Ed was so bereft that he shot himself. He didn't die immediately. And while he lingered for days in the ICU, Terry went and sat at his bedside as he was dying. And she explained that even though he had beat her, she still had feelings for him. What's more, he had loved her deeply. It was love, Terry said. Sure, it's abnormal in most people's eyes, but he was willing to die for it. He did die for it. Mel disagrees. I sure as hell wouldn't call it love. Mel said, I'm not interested in that kind of love. If that's love, you can have it. Mel was also married before to Marjorie. About her, Mel says, there was a time when I thought I loved my first wife more than life itself. But now I hate her guts. I do. How do you explain that? What happened to that love? And after a few more drinks, Mel describes his homicidal fantasies about Marjorie. She's allergic to bees, he says. Sometimes I think I'll go there dressed like a beekeeper, you know? That hat that's like a helmet with a plate that comes down over your face and the big gloves and the padded coat. I'll knock on our door and I'll let loose a hive of bees. Everybody looks a little horrified. Mel assures them, no, first I'd make sure the kids were out of the house. Mel, a surgeon, tells a story about an elderly couple he'd cared for who had been severely injured in a motor vehicle accident. And he describes how shocked he was at something that the man did who was depressed after the accident. Mel assumed it was because of his injuries. So he went to talk to him. The man was all in bandages and in traction and couldn't turn his head to see his wife to look into her eyes. And that's what's making him depressed. And Mel is both shocked and disparaging of this man. Can you imagine, he says, I'm telling you the man's heart was breaking because he couldn't turn his goddamn head and see his goddamn wife. I mean, it was killing the old fart just because he couldn't look at the fucking woman. Do you see what I'm saying? And the story was about how they both do and do not see what he's saying. How in talking about love, they begin to both see love and see one another in whole new ways. Love is obviously central to each of their lives. Yet it remains fundamentally mysterious. Talking about love becomes an enactment of love and a creation of love. And talking about ethics is like that. We needn't agree about what is ethical in order to work together on projects that express our collective moral values. As we talk, we're talking about the case and we're talking about ourselves and about something else altogether, something larger than ourselves or the case. The tough cases demand of us that we interrogate our own deepest beliefs. This challenges our fundamental ideas about who we are and why we do the work they do. Such cases test the bonds that hold us together in moral communities. Did Ed love Terry? Can withdrawal of nutrition from a baby be not just ethically defensible but a deep expression of parental love? The staff in the NICU faced a collective decision. They had to think about how to care for a baby and a family under extraordinarily difficult circumstances. They also had to look at one another and ask, can I still work with you? Are we in this together? They were asking how to go on as a moral community after this baby died because they hadn't fed her and some of them thought it was the absolutely right thing to do and others thought it was abhorrent. Ethics is about learning the rules and then about deciding whether to break the rules or change the rules because one of the rules is don't always follow the rules. The end of the Carver story could be the end of a good ethics discussion about a difficult case in which each of us has had to speak from the heart, listen to one another, interrogate our own deeply held beliefs and then decide where we stand on a morally troubling issue. And the story, after all the revelations, after the two couples have seen new things about each other and thought new thoughts about the meaning of love and loyalty and fear and trust, Nick thinks, quote, the light was draining out of the room going back through the window where it had come from yet nobody made a move to get up from the table and to turn on the overhead light. I could hear my heart beating. I could hear everyone's heart. I could hear the human noise we sat there making, not one of us moving, not even when the room went dark. Michael Masalt, Developmental Pediatrics, University of Chicago. I thought your overview of how the larger culture is involved, especially since we're celebrating the 25th anniversary of the Center, is very important. And the cultural differences were brought home to me by my mentor at Hopkins, Robert Cook. And he had two residents, Bill Bartholomew and Norman Faust, famous bioethicist. And they were involved in the Baby Dough case that the Hasteen Center made a movie, that the Kennedy Center made a movie about, called Who Shall Survive in the 1960s, a baby with Down syndrome born in Maryland who had esophageal, who had duodenal atresia, whose parents refused to consent to surgery. And that was played as medicine making these major decisions and colluding, physicians colluding to be baby killers. That's the lay view of that story. And Cook was the chief of pediatrics, and everybody on the medical staff wanted to intervene for the baby. And the parents' families were Catholic, and they went to their local Catholic priest. And the Catholic priest said, you don't have to do this. This is heroic. This is what I call the community party line in the 1960s. So Cook went to the Bishop of Baltimore, and the Bishop of Baltimore said at that time, children with Down syndrome go to limbo. They don't have souls. This is not the church's business. And then they went to the attorney general in the state of Maryland. And at that time, the legal profession, reply to the Hopkins appeal was that children with mental retardation aren't citizens, have no standing before the law. Parents can do whatever they want. And I think that when you understand the details of all of that, that shows that everybody throws out opinions. Everybody throws out opinions without evidence. People think they've never changed whether you were in the legal or in religious traditions or in the medical tradition. And I would say the evidence doesn't support that, but it emphasizes the challenges. So I mean, the story of treatment for babies with Down syndrome is a good example of one of these shifts in morality where the Hopkins case was in the mid-60s, I think. They made the movie in the early 70s. But the courts had the same decision about the more famous baby dough in 1982 that the parents had the right to make the decision. But now there has been a shift. And the shift happened, I think, through just these kinds of conversations where I mean, I don't think the people who held the views that you just described were bad people. I think they were struggling to figure out the right thing to do. And so were Norm Faust and Bill Bartholomew and Bob Cook. And it was in the conversations where people tried to explore their motivations that they gradually came to a new understanding that's changed the way we think about those decisions. So it's a great, great example. And all three of the physicians involved in care, Cook took a sabbatical in bioethics at Harvard and Bartholomew and Faust became bioethicists and did similar kind of things. Again, I think that it just emphasized that everyone was trying to understand. And these are enormously complex. And you had to walk outside the box. And the movie's hard to find. But if you can find it, it's amazing to watch. They actually recreated a sort of ethics committee with Faust and Bartholomew and Cook and all these people that was one of the first projects of the fledgling committees, that other ethics center.