 But now let me introduce Dr. Ross, who will be moderating the panel on Pediatric Ethics. Lainey is the Carolyn and Matthew Bucksbaum Professor of Clinical Ethics at the University, where she also holds appointments in the departments of Pediatrics, Medicine, Surgery, and in the College. Lainey is an Associate Director of the McLean Center. Lainey has written four very influential books, including children, families, and healthcare decision-making. That's one. Another one is Children in Medical Research, Access Versus Protection, and in the past year or two, Lainey has written two books on transplantation. One is Transplantation Ethics, in a way the definitive book on transplantation ethics, which she co-authored with Robert Veach, and the second book is called Defining Death, The Case for Choice, which also was co-authored with Professor Veach. Lainey has written more than 150 peer-reviewed articles on a wide range of topics, including clinical and research ethics, organ transplantation, genetic testing, human subjects protection, and many other fields. Currently, Dr. Ross serves on the Secretary's Advisory Committee on Human Research Protection, the SACRIP, and as the Chair of the Executive Committee of the American Academy of Pediatrics section on bioethics. As I said a moment ago, Lainey will give a talk as part of this panel, which will be on the Best Interest Standard, and then Lainey will also give the lead talk in the next panel. The title of that talk will be, Paying It Forward, The Ethics and Logistics of Advanced Donation Programs. So it's a pleasure to introduce the moderator for the first panel, Dr. Lainey Ross. Thank you for the fellows. This was meant as a deja vu since you often heard me talk more than once in a day during the summer intensive. It's my pleasure and privilege to start by introducing Bill Meadow, who's been a colleague of mine for over 20 years. Bill is a professor of pediatrics and the Associate Section Chief of the Section of Neonatology here at the University of Chicago. Bill was a McLean fellow in 93-94. I arrived in 94, so I take no responsibility for what he's going to say. In 2016, he won the prestigious American Academy of Pediatrics William Bartholomew Award for Ethical Excellence. He is also an assistant director at the McLean Center and is published widely on neonatal medical ethics, including on issues of resource allocation, informed consent, and prognostication. Bill has mentored a generation of neonatologists in clinical ethicists. Yeah, yeah, yeah. And today, you're going to talk about a full-throated defense of slow codes. Please join me in giving a warm welcome here. I thank Siegs for inviting me, or Lainey for inviting me, or whoever invited me. And I thank you all for turning out so early in the morning. This is a fairly brief talk, and I'll take whatever questions or dodge tomatoes as they're thrown to me later. It's a talk about CPR and how we should or shouldn't do it, and we'll talk a little bit about the larger issues that are involved in this talk. Anyway, this is the disclosure for, I don't know of many ethicists who actually do have financial conflicts of interest. So consider this case. This is a two-year-old microcephalyte child with mental retardation, needs a G-tube and a trach, is admitted now for respiratory failure secondary to RSV, this is a real case, was placed on high-frequency oscillatory ventilation, had pneumothorics, has already had CPR once, is now hypoxic, hypotensive, and bradycardic. And so just sort of put that kind of case in your mind, that's a case that occurs. In our PICU, more than our NICU, in our NICU, this would be a comparable case of a six-month-old who was never been out within court RSV, or a different case, a 24-week preemie now with grade four IVH, who's now septic and hypotensive, despite as many pressures as we choose to give. Or for the adult docs in the room, a 94-year-old demented adult with metastatic malignancy and renal failure. So think about all these cases, they're all at some level on the way to dying. So the question is, what should we do? And the traditional answer, it's fun to make fun of Siegs. He's an easy pinata to deal with, at least somebody laughed, to deal with. But it's an important, he's a major figure in the field, and he certainly teaches the fellows a traditional way to think about medical ethics and one of our roles as the adjuvant faculty is to try to hold his feet to the fire and at the same time give the fellows a sense of where the classical teaching breaks down. So here, from much of the rest of my talk, I'm going to suggest that Siegs's classical model does break down. The first thing to note by definition for the children's cases is that the classic model of a transaction or a dyad between a physician offering choices and a competent adult patient accepting or refusing or choosing among them is irrelevant because in pediatrics the patient is a child and in articulate, and so we choose the parents to talk to and the parents are thought to be the natural surrogates, but right away as we'll see that that will introduce a certain amount of discord or potential for discord. Another stakeholder or group of stakeholders in the issue is the Docks and the Nurses and we have seen on number of occasions a case conference in Yuval encountered areas where the Docks and Nurses interests differ from the interests of the parents and what might be a good death from the parents' perspective? Well, this is the one that people talk about the most, that it's a peaceful death, a comfortable death, palliation, grandma's feathered bed, that was a John Denver song by the way. It was a nice song, I like John Denver. So peaceful death with comfort and palliation is the one that most people talk about, but not everybody thinks that way. Many people think about not giving up, my baby's a fighter, she deserves a piece of the pie. That was the literal name of a paper that came out of Colleagues of Hours, former McLean fellows maybe 20 years ago now. This idea that at least for a subset of people who feel that for much of their lives they're disenfranchised for social resources that at least at the end of their life they ought to be allowed to utilize the kind of resources that rich white people could get. So there's a third possibility between peacefulness and not giving up. And that would be to allow the family to be ambiguously non-complicit, so they wouldn't necessarily endorse or embrace giving up, but they wouldn't endorse or embrace fighting either. So it could be somewhere in the middle, and we're going to explore a little bit about that middle crowd. So the question to come back to, and my colleague, Dan Bredney, has once very politely, from my perspective, given the way I do medical ethics a name, he called me a consequentialist, which I think is just right, that what I do for most cases is I think about the ending. And then I work backwards from the ending and say, how can we all best get there with the least amount of discord? It has the disadvantage of being intellectually or academically disjoint, in different cases I'll have different kinds of modes, but in this case we'll see what happens. So comfort care would be a way to deal with how this baby should die. You should ex-debate or not resuscitate, certainly not through CPR, because the baby's going to die anyway. There's a terrific paper by Meadowen colleagues that talks about the fact that for babies in the NICU, if you are dying and you don't have an acute immediately recoverable event like an hemothorax, that CPR is irrelevant anyway, you're all going to die. John Blantos, right there, was co-authored on that paper, unbelievably good. So what does comfort care do? Comfort care makes the docs and the nurses happy. That's what they want to do. They don't want to do CPR on this baby. And the parents may, but they may not accept complicity. They may be over the opinion that their baby deserves or should get more in the way of efforts. The alternative is, and somebody was just asking me about this last Wednesday, case comforts. Does our hospital have a policy for unilateral DNR? Siegs and I talk about this all the time. Jesse Hall, who is head of the adult ICU here, was instrumental in writing the unilateral DNR. Understand doesn't mean that a doc writes DNR, what it means is that a doc writes DNR over the explicit objections of the family. The family wants you to resuscitate and you say no, it would be futile and we basically, the subtext is we have the power, you don't have the power, this isn't going to work, we know it's not going to work and you're not going to make us do something we don't want to do. Okay, so the docs and nurses professional ambience is respected, but you could make a good argument that the parents are disrespected in this context. Finally, there's full CPR, that's the classic third option. Okay, parents, if you don't want to do DNR and we've chosen not to invoke unilateral DNR because they would be too disrespectful, screw you, we're going to break your kids' ribs for 30 minutes and give you a lot of shots of epi and it's not going to work anyway, but at least you'll feel respected. The docs and nurses feel that it's a total waste of time and for many of the nurses who actually sit at the bedside of this kid, they'll think it's cruel and harmful, painful to the child to the extent that the child continues to be alert enough to feel pain and that that's probably not an ideal perspective. It certainly is. When people talk about the production of anxiety, immoral distress in the NICU, that this is one of the cases that is most frequently brought to mind is this idea that babies are subjected to futile suffering. So there's a fourth option and it's a fourth option that John and I have written about. Siegs is slowly coming around to it, although we'll see in his next version of his book whether he's coming around to it. It would be what I deliberately and provocatively call a slow code and we'll talk a little bit about what a slow code might mean. So slow code or something less than a full code is, we argue, at times the best of bad choices. It allows for a compromise that either makes everybody feel a little okay but everybody feel a little bad. The doctors and nurses feel less frustrated and they have to do 30 minutes of CPR if they have to do three minutes of CPR. The parents are still respected, although Rick Kodashua, I don't think he's here. I haven't seen him. Is he here? No. Yeah. He wrote a response to one of our papers that John and I wrote where he called us basically a fraud and said that doctors shouldn't be doing things that are non-traditional and non-inappropriate because they have no medical purpose and we, I like Rick a lot. The parents are still respected in this context of a slow code at least to the extent that you're doing some CPR on them and the baby is less subjected to pain and suffering because you're only doing it for three minutes instead of 30. So what other people think of slow codes? This is certainly something that you all are aware of. Most people don't like them. So the American College of Physicians Ethics manual says because there's deceptive physicians and nurses should not perform half-hearted resuscitation efforts. Slow codes. That's their words, not mine. They choose it because it's a provocative word. Seigs himself in his previously ignorant days called it dishonest, crass dissimulation and unethical. Others have called it deplorable, dishonest and inconsistent with established ethical principles. Rick Kodish wrote patients, families and health professionals all need to rely on a good faith assumption that when CPR is attempted it will be done with vigor. In genuine hope of success, if you're going to do something, do it right. Sharrades are not acceptable when it comes to life and death matters and that's certainly a nice articulation of a view which I think is charming and charmingly wrong. The problems with the slow code are easy to articulate. One is people claim that we've just failed to communicate. If you'd only been more successful talking to the family you would have brought them around to your view that CPR is not in the baby's interest and you should simply do it. And that sometimes happens but it sometimes doesn't. Some people don't like slow codes because they think they're lying, that they're simply deceptive and we'll talk a little bit about that. It's not the best practice, technically the baby is your patient not the parents. That's an important concept and we're going to spend just a little bit of time talking about that today but not a whole lot of time. Oh, it's not going. Oh, alright, I'm not going to be much longer. So let's talk about failure of communication. Sometimes slow codes are a family of communication. We just had a case on Wednesday where we spent a long time in the family we didn't want to give up and it was the adult son of a very older woman and he refused to give up, refused to give up, refused to give up and then finally at the end the docs convinced him that he should and the case went away. It was a nice case. It was an example of how don't get angry at patients or their families be as respectful as you can and oftentimes things work out. But sometimes people really do have different values. Sometimes they really think that it's important to be resuscitated to the very end and that anything less would make them complicit with the murder of their family member and they don't want to be complicit. Okay, is this slow code deceptive or lying? Well, I would argue, John and I have written about this, that that's a very thin view of the truth that suggests that there's only one way to envision what the truth is in this context. That in particular we would argue that ambiguity is not necessarily dishonesty and this is an important word for the young ones in the audience, the people who are actually talking to the families at the time that we're talking about what's likely to happen to their loved one. That you try never to be put into a box of saying we're going to do everything and when parents or families say to you, we'd like you to do everything. That the rejoinder is yes, we'll do everything we can that we think will help and that little bit of distinction allows you a certain bit of flexibility to do what you think is right and yet not be explicitly lying to the family. Okay, some people think slow codes are not professional, it's not the best practice, that's what Rick was talking about and this idea that the baby is your patient, you see not the family is your patient, okay. And I can't be clear enough that I don't think that's true, okay. Indeed I have been known to say all of medicine is pediatrics, obviously pediatrics is pediatrics and so in pediatrics we always have the families involved but in fact in almost all of the cases that are brought to the ethics group there's always family members and the family members are intimately involved and this idea that sort of seizes model of a transaction between a competent patient and a physician is almost always inadequate. There's almost always at least one if not more than one third party involved and I would argue those third parties are legitimate ethical stakeholders. We ought to consider them, they shouldn't be irrelevant in all of our considerations, in fact they shouldn't be irrelevant in any of our considerations. Then finally there's the administratively inconvenient argument, it's actually been made in print, slow codes are probably a good idea but they're too hard on residents, fellows and nurses. And so I don't have any more to say about that except that everybody over the age of 60 has no idea what that means. Finally I would argue and I'll sort of close with this that the problems of the slow code are linguistic okay and so I'm going to offer you here linguistic alternatives to the use of slow code which is a phrase that I choose deliberately because it's offensive. And so here are alternatives to slow codes that would be perhaps more acceptable to you all. You could call it a tailored code or perhaps a short code, perhaps a low dose code and abbreviated code and appropriate code, one that's actually accurate but people don't like as much call it a symbolic code and the last one is the one that is most popular these days which is it's a family-centered code. This idea that family-centered medicine is what we do now both at our place and at most places. What are practical alternatives to slow codes? Well one is to work harder and get consent. We've talked about that. It works sometimes but not all the times. Ascent is fairly important. We invent this idea that if you tell people something and they don't explicitly object then they have assented. Then you could put the shoe on the other foot and say if they don't explicitly embrace what you said they have dissented but that's not what we do because that would be less convenient for us. So if you say you know we're at the end and a family member goes you then take that as okay good I can do what I want but that and so we look forward to non-descent as something that we then take as license for us. Full CPR we've talked about. It is what some people recommend it's clearly in my view a mistake and to tailor the code as medically appropriate and the irony of course was when John and I submitted this and we published this a couple of years ago in the American Journal of Bioethics. A lot of people wrote about the idea of our slow code as being unethical and inappropriate. Okay, but here's what they said. It's okay to do various limits. One dose of epinephrine, five minutes of bagging, appropriate to do three minute codes, five minutes even less might be appropriate if the patient not survived. Clinical circumstances dictate the extent of the resuscitation. It's appropriate for the doctor at the bedside to make the decision. And so here's what we say about that. They get it half right because the question is for all of you out there, how many of you guys who run or are valuable in codes tailor your codes which is to say that some patients get longer codes than others. And the answer is show of hands. Okay, pretty much everybody who runs codes runs some people longer and some people shorter. But now the key question is how many of you tell the parents that your baby is only going to get two minutes but your baby is going to get 25 minutes? And the answer is nobody does that. Okay, indeed it would be, I would argue insulting to do that. And so we rarely offer all of the medical options that might be possible. We don't offer LVAD or ECMO or all the drugs we could give or duration. And we rarely tell the parents that we're not going to offer all these options. So at some level I would argue all codes are slow codes as they should be. And so I'll take questions if you want or not, but I'm happy to. Yeah, okay, go ahead please. Art Dersi from the Medical House. Yeah, I know who you are. All right. So if another neonatologist is not willing to do a code, could they offer transfer to you? Sure, because it seems a little cruel, I mean. But you're offering something that they're not willing to offer. Yeah, no, no. I mean, but think about it from a practical perspective, would you send them across town? That seems nuts. If that seems nuts, maybe the slow code is in the same category. So I would argue this is a great discussion and you're wrong and I'm right, that I mean you really don't want to be sending somebody across town at the time of their death because you can't get over the idea that you should run a code a little shorter than you otherwise do. Oh, contrary, I would say that if you're offering something that the family thinks is absolutely vital. Yep. You're offering it and the other doctor's not. That sounds like... I would take the transfer, but I would try to, how shall I say comfort, counsel my colleague at the other institution that they should suck it up and do it. Yeah, okay, thanks. Hi Bill, over here. Oh, there you go, yep. So I couldn't resist. So I really agree with you that given the current standard of care that the performative aspect of CPR are important enough for people to do some sort of performance and that's what you're talking about really. I think the problem there is in people's expectations about getting their money's worth from medicine and I think that was created way back when CPR became the default, when it was listed as a billable diagnosis in the CPT in 1970 and I think we have a lot of work ahead of us in convincing people that although we, you know, that this is part of everything which is sort of created in the 1970s that we need to change people's idea about what everything is. I think that's a great thought. I fear that at the moment in America it's unachievable at the moment. I agree with you at the moment, but there is the future. Yeah, I had a debate, John invited me once to have a debate with one of our wonderful Canadian colleagues, Annie Jean-Vier, about exactly this issue and she completely outflanked me from the other side. She said, in Canada this is not an issue, we just don't offer codes if we don't want to. Okay, Siegs, one last question. My question is really in line with Dan's and with what you just said. I would love to see you and John apply your intellect to changing the standard of not mandating that babies who die must have CPR. It's something that Dan himself has been working on with regard to adults. I mean, CPR arose in respect to adults. It got applied broadly and widely to everybody. It also was developed for outpatients, not for inpatients. So I think what you and John are ultimately getting at is the craziness of the current standard. I would prefer that rather than manipulating it with slow codes or agreed upon codes, you really go and you press hard to change the standard. Yeah, I hear you, I think you're wrong. I think that in America that's not going to happen, it's not likely to happen. I'm not even not so sure that it's desirable to happen, but I think that certainly right now you can apply our standard and if you and Dan succeed in changing the world in the next 15 years that would be terrific and I wouldn't run CPR, but tomorrow Kelly is going to have to code people in her unit and she's going to talk right now. Thank you very much. You're welcome.