 Before moving to Missouri, John was the Chair of General Pediatrics, as well as the Associate Director of the McLean Center for Clinical Medical Ethics, and then moved to become the John B. Francis Chair in Bioethics at the Center for Practical Bioethics in Kansas City. He's also the former President of the American Society of Bioethics and Humanities, former President of the American Society of Law, Medicine and Ethics. He's published five books over 250 academic works, and today he will be giving a talk titled Clinical Ethics in Pediatrics and International Perspective. Please join me in welcoming back Dr. John Lantos. So I'm going to talk a little bit about some of the stuff we've learned in our Bioethics Center, particularly from international students who have come through our program. It's been an amazing experience. I mean, we built a program largely modeled on the fellowship here at the University of Chicago, inspired by the great Mark Siegler. I can't believe you're really going to retire. Don't do it ever. We need you. But our program's been mostly an online program, so we've been able to take fellows from all around the world. So I'll tell you a little bit about the program and then about some of the lessons that we've learned. We are in a freestanding children's hospital. Those, as you know, are very different than big academic medical centers. They're built to look like Disney World and be child-friendly. We have a lean and mean staff. Brian Carter is a neonatologist who wrote the first book on pediatric palliative care, Jeremy Gerrits, a philosopher. We trained down in Texas with Tris Engelhardt and Baruch Brody. Angie Knack says a nurse educator who started something called a Nurse Ethics Forum in the Children's Hospital, separate from the Hospital Ethics Committee. And we have some administrative staff. We do a lot of the things that Bioethics Centers do all the time. We write about all sorts of topics in pediatrics and publish papers. We've started as part of our outreach to the international students to do webinars live, webinars where we bring in speakers. People can log on. They're interactive, so we can have conversations with people in real time from around the world. Like most good Bioethics Centers, we have a Bioethics Center band. Ours is called the Futility Project. And we play for... Barmitz was in graduation. The certificate training program was the first in the world to focus entirely on pediatric bioethics. Now we're in our eighth year. We've had over 200 students from now about 35 countries. It's for any experienced child health professionals. So it's not just for doctors, doctors, nurses, social workers, OTs, PTs, Child Life, genetic counselors, chaplains, and all these people from their multidisciplinary background and from their different countries lend a richness to the conversation that is sort of what I'm going to talk about today. It's just a map of all the different countries where people come from. Here are some pictures of the students that's in our beautiful chapel in Children's Mercy Hospital. And this program has given us opportunities to learn about other countries, to engage with child health professionals from around the world, and to find some key differences from many of the things that we're talking about today, which, you know, you talk about the common rule, or you talk about social disparities, or co-pays and deductibles. I mean, those are all very American ideas in pediatrics. We talk about the best interests of the child, and we talk about child protection systems. And as I'll explain, those are ideas that are not only foreign, but seem quite bizarre to many child health professionals in other parts of the world. One of the best ways we've learned about what's really going on is to go visit our graduates, many of whom are trying to start bioethics programs, and in particular pediatric bioethics programs, at their home institutions. And when we go, these tensions between the sorts of things that we think about and talk about and the sorts of things they need to hear about and teach us about are fascinating. This was at St. John University next to me is Dr. Laura Miller Smith, who's one of our pediatric intensivists and also the current chair of our Hospital Ethics Committee. Before academic meetings in India, distinguished speakers all light the lamp of wisdom, a six-wicked lamp that is supposed to bring down wisdom on the discussion and raise the level of academic discourse. I did grand rounds at Agha Khan University in Karachi in Pakistan. I'll tell you about the case that they presented to me there. On Gira Patel, where are you? On Gira came with us to India on one trip. This was one of our graduates. The Malaysian Pediatrics Society talking about bioethics. So let me tell you a little bit about some of the things we've learned in some of these different countries. Here are some of the stats from Pakistan. They're similar. I'm not going to go through these kind of numbers for all the different countries, but they're similar in all the different countries. About a third of the populations under the age of 14, about half under the age of 18. So half the population falls into the pediatric age group. 35% of the people live below the poverty level. Very few people have any sort of health insurance. Extended families pay for care and extended families make health care decisions. For children, gender discrimination is rampant both in things like medical treatment but also in things like nutrition. If you look at growth curves, stunting is twice as likely in little girls as in little boys. There are no child protection laws. The idea that medical neglect or even physical abuse would trigger a call to a hotline where they would investigate and take protective custody doesn't exist. Physician paternalism is the dominant model for decision making and as we learned people treat their physicians as almost holy figures next to God. They do have a National Bioethics Commission and they've started to implement a curriculum but it hasn't been adopted by many medical schools. One of our program grads set up the first pediatric bioethics program at a medical school called Shalimar in Lahore in Pakistan. And when I went they presented me with this case. A five day old came to clinic with poor feeding and lethargy. The baby had been born at home, was brought to a general practitioner by the grandmother. The general practitioner thought, found fever and suspected sepsis, suggested a septic workup and admission for IV antibiotics. The grandmother who brought the child in because the mother was at home with four other children said they didn't have any money for admission. The father was not even with the mother and the four children but was away at another village where he'd gone for work and the grandmother said no way we can do this. We're just going to take the baby back to a spiritual healer in our village and they said to the visiting pediatric bioethicist from Kansas City the ethical issues here. Most of the ways that we would analyze this case didn't seem particularly relevant. I mean the ethical issues are clear if you say what's in the child's best interest. It would obviously be to be admitted and get the antibiotics. If this happened in our hospital we would call child protection or take emergency protective custody as we are empowered to do by our country's laws but in Pakistan and in most other low and middle income countries the family is empowered and titled to make these decisions and so the idea of advocating for children's rights and the role of pediatricians in bioethicists become much more complicated. There's little awareness about patient's rights. Spiritual healers have very high status in society so this idea that the mother was going to take the child to a spiritual healer even if there was a child protection system would probably be considered an acceptable decision. There's no social workers, no insurance, even very few pediatric intensive care units so even if this kid was admitted the chances of a good outcome if the child was in fact accepted would not be very good. Let's just summarize the case. Malaysia is a very interesting country for a lot of reasons. One is that it's multilingual, multicultural, pluralistic. The three big populations are Hindu, Malay and Chinese. There's key issues in Malaysia including female circumcision or genital mutilation. Lots of child marriage so girls are married off at ages as young as 9 and 10 and Malaysia is also a center of illegal immigration so issues arise in their national health system about the rights of what they call stateless children we would probably call undocumented. There's no formal clinical ethics. One of the things we've found which is pretty interesting especially in light of the last talk is for research ethics everybody follows something like the common rule. Everybody has an IRB because everybody wants to collaborate with western researchers and get NIH sponsored studies so the discussions of research ethics look almost exactly the same as the discussions we would have here. The discussions of clinical ethics don't exist. The idea of a hospital ethics committee or an ethics consultant is a pretty foreign idea. Malaysia also has a dual legal system so non-Muslims are subject to civil law and Muslims to sharia law. Schools and universities are segregated on racial lines and linguistic lines so different languages in different schools, different legal systems so when people talk about what's legally available as an option in Malaysia the first question is which ethnic group do they belong to and that determines which legal system they would be subject to. Interestingly in 2017 stimulated by a couple of our program graduates they held a National Pediatric Bioethics Symposium and brought together the Academy of Medicine in Malaysia the Institute of Islamic Understanding and a National Bioethics Council that attempted to develop a standardized curriculum for medical students. That was developed, recommendations were made although studies are ongoing as to whether it's actually implemented. India has a council of medical ethics and a standardized curriculum for their medical schools recommended by this council but very few medical schools have actually adopted it. India has both public and private hospitals and public and private medical schools many of the private medical schools have religious affiliation so the one I showed a picture of St. John is a Catholic university and their ethics curriculum is derived from Catholic moral principles. Interestingly in India although they have no medical neglect child protection laws they did pass in 2012 a law outlawing sexual abuse of children which was the first recognition of child abuse as a legal problem and empowers government and doctors to protect children from abusive family members. Some of the doctors we've trained and some of the doctors on these councils are trying to use that law as a model to say there's other forms of abuse not just sexual abuse maybe we could apply these to medical neglect decisions but as of now there's not another interesting thing in India. DNR orders or orders to withdraw life support are illegal they're considered passive euthanasia and both active and passive euthanasia are illegal so doctors cannot write a DNR order or write an order to stop a ventilator but they get around it by discharging the patient against medical advice doctors aren't allowed to write the order but if they've discharged the patient then you can't send them home on the ventilator so then you can withdraw life support so in clinical ethics discussions they will say should we drama this patient discharge against medical advice as a way of saying is it time to withdraw life support it's pretty interesting work around for... here's a case that they presented a baby they called AD developed irreversible kidney failure parents agreed to home peritneal dialysis and did that at home for about six months and then they stopped coming in for follow up refused to return phone calls eventually the doctors discovered the mother was pregnant and they had no interest in continuing peritneal dialysis presumably because they were having another baby so were no longer interested in saving the life of this baby baby died a few months later around the time the second baby was delivered the doctors involved in the case were deeply ethically conflicted but powerless to do anything to stop it one of the themes that comes out of a lot of these discussions is in the United States the focus of pediatric bioethics is on the best interests of the child the state can override parents in most of low and middle income countries where we've had experience the locus of medical decision making as the family and the idea that the child has legal or ethical claims against what their parents say is in the family's interest doesn't carry much weight Mexico is a little bit more developed than other countries the Society of Pediatrics has a pediatric bioethics section some of the largest children's hospitals in Mexico have hospital ethics committees and do consultations one of our program graduates reviewed the clinical ethics committee consults over a few years at one of the largest children's hospitals had 49 cases most around withdrawal of life support in 2017 they initiated one of the first pediatric palliative care programs in Mexico so in summary the west and the rest in western countries we accept that children have children have rights to treatment the state allows doctors to enforce those rights and usually there's one legal system that we can appeal to in making claims about taking protective custody in low and middle income countries parents and families have the power there are often multiple legal systems way fewer resources and it leads to decisions based on family interests like what they refer to in India's replacement babies if one baby is dying you let the baby die other gender discrimination which is rampant and intrafamilial resource allocation where families say we're not going to spend much on we don't have enough to spend on one child usually female because we're putting our resources into another the challenge for our graduates has been to advocate for children while being sensitive to the cultural context they come they read about bioethics in the west they try to take that home run into the sorts of barriers that I've been describing here today which is better well I think that's actually an interesting question it's easy to say our systems right theirs is wrong but this was a commentary that Dr. Bouda who's one of the leading pediatricians in Pakistan actually goes back and forth between Toronto and Pakistan wrote in response to a paper that Mark Siegler and Peter Singer and Ed Pellegrino wrote clinical ethics in 2001 advocating a western approach and Dr. Bouda said many communal and underdeveloped societies handle ethical dilemmas in a manner that's worth emulating a sharing of burden among extended closely knit families and communities with faith providing the important binding force and solace is often the key raising the question of whether information and learning should flow just one way from us to them or whether we also have things to learn so thank you very much Excellent John what does it cost a student in your ethics certificate program and do they come out of their own pocket or are they being sent by either their government or their institution The tuition is now 10,000 we've had scholarships for people from low and middle income countries some pay themselves some are sponsored by their institution Thank you John in terms of the replacement baby and your final quote about spirituality faith-based thinking I know you know Alif Bet Yehoshua is writing this novel called Open Heart where he talks about transmigration of souls was that part of the story do you think in that baby who was on dialysis the replacement did they think it was an insolment of the next baby one of my favorite novels Open Heart but Yehoshua I don't know if it's insolment transmigration or whether it's just that death has a different meaning in all sorts of ways one of the themes in that novel is when the Israelis travel to India and start talking to their Indian colleagues about death they're surprised that for the Indians death is not an unpleasant thing to look forward to it's the culmination of a life well lived so it may be that it's something related to like a completely different set of cultural values whether it's about reincarnation, transmigration of souls or just the idea that death is a natural part of life not the enemy the novel is called Open Heart by an Israeli A.B. Yehoshua said in a Tel Aviv hospital so I really appreciated the presentation I think that I have also found when we've done research ethics training internationally there's been this gap in clinical ethics training and resources I had just one quick caution and one question one is that I think it's hard to generalize about certain countries sometimes the urban-rural divide is more significant than the inter-country divide and I also think India in particular is a country with lots of different religions and different cultural beliefs that people may adhere to in different to different respects I think the other thing, the question I had was about how to support people when they're going back to other countries so I've often found the ethicists we've tried to support have multiple jobs and no protected time for research and in bioethics in particular and I'm wondering how you've navigated that the first one of course any generalizing about any country certainly India with its 1.3 billion people 23 official languages it would be like saying Europeans think it wouldn't even be like that five Europe's all think the same way so yes on how to support them key question I mean the other thing that I didn't talk about that came up in a lot of these discussions is when we talk about doctor-patient relationship and shared decision making and informed consent and empowering patients and having these discussions they say we see 200 kids a day in clinic three minutes each they have five diseases you think we're going to do shared decision making and a long discussion so that kind of support but also building support for the idea that okay western ideas aren't going to help you what are your ethical dilemmas creating a bioethics center in the socio-political and cultural context here might help clinicians here deal with the specific problems that arise here and so that's the approach we've taken in advocating for resources for this kind of work in these countries thank you very much