John Lantos - Clinical Ethics in Pediatrics: An International Perspective

Event introducer

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, an International Perspective. Please join me in welcoming back Dr. John Lantos. So

Dr. John Lantos

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 Ziegler. I can't believe you're really going to retire. Don't do it ever. We need you.

Dr. John Lantos

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 free-standing 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 Garrett's a philosopher. He trained down in Texas with Tris Englehart and Brooke Brody. Angie Nackstead's 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.

Dr. John Lantos

Ours is called the Futility Project. And we play for bar mitzvahs in graduation. 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 professional. 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

Dr. John Lantos

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 things. 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 Aga Khan University in Karachi in Pakistan. I'll tell you about the case they presented to me there. Angira Patel, where are you? Angira came with us to India on one trip. This was one of our graduates at the Malaysian Pediatric 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 population's under the age of 14. About half is 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 healthcare 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

Dr. John Lantos

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 found fever and suspected sepsis, suggested a septic workup and admission for IV antibiotics. The grandmother who

Dr. John Lantos

brought the child in because the mother was at home with four other children said we don'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, what are the ethical issues here?

Dr. John Lantos

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, entitled to make these decisions. And so the idea of advocating for children's rights and the role of pediatricians and bioethicists become much more complicated. So there's little awareness about patients' 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 septic 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,

Dr. John Lantos

Confucian. 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 nine 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

Dr. John Lantos

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. I mean 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 of 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 been implemented.

Dr. John Lantos

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 affiliations, 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

Dr. John Lantos

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. 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 DAMA this patient,

Dr. John Lantos

discharge against medical advice, as a way of saying, is it time to withdraw life support? It's a pretty interesting workaround for Here's a case that they presented, a baby they called AD developed irreversible kidney failure. Parents agreed to home parent needle 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 peritoneal dialysis presumably because they were having another baby so were no longer interested in saving the life of this baby. The 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

Dr. John Lantos

low and middle income countries where we've had experience the locus of medical decision making is the family and the idea that the child has legal or ethical claims against what their parents say is in the family's interest It 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.

Dr. John Lantos

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 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

Dr. John Lantos

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 that leads to decisions based on family interests, like what they refer to in India as replacement babies. If one baby's dying, you let the baby die and have another 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, but 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 system's right, theirs is wrong, but this was a commentary that...

Dr. John Lantos

Dr. Buddha, 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 about clinical ethics in 2001, advocating a Western approach, and Dr. Buddha 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 provided 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. John.

Audience member 1

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?

Dr. John Lantos

Tuition's now $10,000. We've got scholarships for people from low and middle income countries. Some pay themselves. Some are sponsored by their institution.

Audience member 2

Thank you, John. In terms of the replacement baby and your final quote about spirituality, faith-based thinking, I know you know Alephbet 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 and the replacement? Did they think it was an ensoulment of the next baby?

Dr. John Lantos

One of my favorite novels, open heart, by Yehoshua. I don't know if it's in Solomon, transmigration, or whether it's just that death has a different meaning in all sorts of ways. I mean, 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 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. I don't know.

Audience member 2

Not the enemy.

Dr. John Lantos

The novel is called Open Heart by an Israeli, A.B. Yehoshua. set in a Tel Aviv hospital.

Audience questioner with international research-ethics experience

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 differing 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.

Dr. John Lantos

Yeah, on 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. It would be like saying, 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. We have three minutes each. They have five diseases. You think we're gonna do... shared decision-making and a long discussion.

Dr. John Lantos

So that kind of support, but also building support for the idea that, okay, Western ideas aren't gonna help you. What are your ethical dilemmas? Creating a bioethics center in the sociopolitical 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.

Event introducer

Thank you very much.