Teaching Ethics at the Bedside | Pediatric Grand Rounds | Mattel Children's Hospital UCLA

Clarence Braddock

It's really an honor to have a chance to talk to you this morning about teaching ethics.

Clarence Braddock

As Dr. DeVascar said, I've been involved in clinical ethics for quite some time. And in that work, I've found that the framework that we'll talk about today has been extraordinarily useful. As you think about your day-to-day work, all day long there are issues that come up where you're trying to decide the right or best course of action. And my talk today is really about providing some tips and tools for those situations. Specifically, when we're done today, I hope you're able to describe a framework for analyzing common ethical dilemmas in practice. Kind of be able to explain the connection between that framework and the core principles that we've all learned in medical school and our training that govern, if you will, biomedical ethics. But importantly, be able to apply this to a case. So let's start with a case.

Clarence Braddock

A four-year-old boy suffered traumatic brain injury in a motor vehicle accident. Now, six months after the accident, still in an unconscious state, he's diagnosed as being in a persistent vegetative state. Over the course of the ensuing months, he has multiple bouts of pneumonia, each time leaving his pulmonary function somewhat more compromised, to the point that he now requires long-term mechanical ventilation. His parents provide mechanical ventilation in the home, as well as the other care that he needs. But he periodically has recurrences of pneumonia and is hospitalized, again, each time leaving him a little bit worse off than before. Now he's readmitted to the hospital with pneumonia and respiratory failure, requires intubation, now is in the intensive care unit, recovering slowly, but there's worry that he may not be weanable from the ventilator yet again. And the physicians on the team begin to wonder whether continuing the mechanical ventilation long term might be futile, might be medically ineffective. So I failed to warn you that in this Grand Rounds, I'm going to put you to work a little bit. We're going to work on this case together. So my first question to you

Clarence Braddock

is whether you think, just hearing what you've heard at this point, whether withdrawal of the mechanical ventilation would be appropriate. So take one minute, turn to the person next to you, and convince one another what you think the stance should be. So it's clear that there's not an obvious right or wrong answer. And at the end of the day, probably the main thing I want you to take away from our conversation today is that the goal of ethical analysis is to develop considered judgments. It's about not finding the right answer, because there rarely is a right answer. It's finding the answer. That's the best. That's the most ethically sound, most ethically justifiable, being in touch with the core principles of biomedical ethics. I want to compare and contrast two ways of doing that, the so-called simple judgments. Simple judgments doesn't mean that they're simple and simple-minded. It means they're quick. They're almost reflexive. We make these simple judgments every day.

Clarence Braddock

You know that no one has to do any kind of ethical analysis to tell you that it would be wrong to steal something from a patient. There are certain things that are very obvious. So an ethical opinion based on an initial impression, a gut reaction, is a simple judgment. The goal of ethical analysis is to move in complex situations from that simple judgment to more of what we call considered judgment. That is, the product of a structured approach toward reflection and analysis. And what we're going to use today is a framework that I'll share with you in a minute to do that kind of structured reflection and analysis. Now, of course, everyone remembers your ethics course in med school and the four principles. You can probably recite them. The principle of beneficence, that is, as physicians, we try to the greatest extent possible to do things that are of benefit to our patients. Non-maleficence, the notion to avoid harm. The idea of respect for autonomy, that is, respect each individual's Right to be self-governing, to be involved in decision making to guide the course of their life's journey. And obviously in your specialty, that's talking with parents about their views on their child's life journey. And justice, the notion that we need to provide similar service to individuals in similar situations so that there's fairness and justice in health care. These are the four principles that we've all learned in our training that form the foundation of medical practice. The tricky thing is that, and you can reflect on this in your own experience, that oftentimes these principles, you kind of know them, you can recite them, but as you think about a case like I just presented to you, how do these principles help guide you to a considered judgment? It's not so straightforward how that would work. So three authors, a bioethicist, a physician, and a lawyer, put together the following framework, which I'm going to dub the ethics workup. a framework for ethical case analysis that goes like this. There are these four domains for consideration of information that we want to gather and reflect upon about a case. And as we work through these four boxes of this framework, it poses questions for us about the kinds of questions that we should be asking, the answers of which will begin to highlight what might be the best course of action. So we're going to use this framework to walk through this case together and see if it leads us from the discussion you just had a minute ago with your neighbor, whether that opinion changes if we go through this structured

Clarence Braddock

framework for reflection and analysis.

Clarence Braddock

So first, let's start with medical indications, the first box. And again, thinking about the principles, this links directly to the principles of beneficence and non-beneficence. Within this particular part of the ethics workup, we're going to ask the following questions. We're going to kind of make ourselves think about the nature of the patient's clinical problem. Is it acute or chronic? Is it critical, reversible, emergent, terminal? Questions like that. We're going to ask, what are the goals of treatment? More on that in a second. We're going to ask ourselves, are there any treatments or decision points that actually don't make sense, that are not indicated, that are futile? More on that in a moment also. We're going to reflect on the probabilities of success, the benefits, of that and what harms we can avoid, the burdens of that. And again, the beneficence, non-beneficence is about benefits and burdens. So when I said goals of medicine, there are many goals of medicine, right? But it's important sometimes to really be very explicit about when we provide treatment, what our goals are. Sometimes the goal is to cure. To eradicate an infection would be a great example of that. Sometimes it's to relieve symptoms. And certainly in the case of patients with chronic conditions, for managing symptoms and really not always seeking a cure. Improving and stabilizing function, oftentimes in acute situations, stabilizing respiratory function, for example, to allow another underlying process to resolve is another goal. Sometimes it's preventing untimely death, preventing harm, and in the case of primary care in particular, it may be to promote health or to prevent disease or illness. So this is not meant to be an all-inclusive list, but it's worth reflecting on what our goals are in the particular instance that we're dealing with. So let's think about our case.

Clarence Braddock

So let's just take one intervention. Obviously, the question that's come up is whether mechanical ventilation continues to be an appropriate intervention for this child. So let's focus on mechanical ventilation. So in the indication, we want to think about what is the goal for this intervention. What do you think? If you were asked, what is the goal for continuing mechanical ventilation for this child, what would you say?

Clarence Braddock

Keeping him alive. Keeping him alive. So to maintain life, preserve functioning, stabilize to allow continued life. Any other thoughts? Any other goals that pop into your head?

Clarence Braddock

Okay, so we'll stay with that one. So the question would be whether it's preserving life or maintaining function. Oftentimes, particularly in critical care situations, it is worth thinking about the intervention not as an intervention in and of itself, but as a bridge. And I've used this metaphor a lot with patients and families that the question may not be about mechanical ventilation per se, but it as a bridge to some other state that we're trying to get to. Certainly in an instance where someone is critically ill, but you expect the underlying illness to resolve, it makes sense to provide that bridge, to provide resolution of the underlying illness, acute respiratory failure that's going to resolve because it's from an infectious process, versus if it's a bridge to nowhere and there's everything in between. So then as you think about that, the question then becomes, if the goal is to provide mechanical ventilation, in order to have a bridge to some other state, can this goal be achieved? Can this goal be achieved? And as we think about this question of likelihoods of success, within this medical indications box, it's often helpful to actually look to our clinical experience, particularly those who have experience in that area, but also to medical evidence. So again, as you're thinking about the ethics workup, part of the workup is to ask yourself the question, is there evidence from clinical experience or from the literature that can inform this question of the likelihood of success. So as an example of that, I found a paper. It's an old paper, so pardon me for using something that's a little bit dated, and perhaps there's something more recent. But this is a study of, they took a large database of children with chronic conditions and looked for those who met the case definition of persistent vegetative state. And then they followed that cohort over time to look at survival. And this is what they found. So this shows the median survival for children in persistent vegetative state by age group. And you can see, ranging from children under the age of one, median survival is about 2.6 years, up to 19 and above, the median survival was nine years. So at one level, providing mechanical ventilation, if the goal is to keep the child alive, has a reasonable likelihood of success, has a reasonable likelihood of maintaining that current state. So we might think we're done here. We've established that the ventilation is a reasonable intervention. But I'm going to push us a little bit farther to think about this question of futility. For how many of you has the question of medical futility come up in your clinical practice? Just a show of hands. So we're going to spend a little bit of time on that because it's a very important concept that is somewhat controversial. But having a clear sort of notion of it can be very helpful at the bedside. So what does it mean to say a treatment is futile? And I emphasize that we always talk about treatments being medically ineffective or treatments being futile, not care being futile. And that's an important distinction, which I'm sure you appreciate. So I'll start with the quote on the left, which comes from the AMA Code of Ethics. It's a statement that's found in many codes of ethics from professional societies and others. And it says, physicians are not ethically obligated to deliver care that, in their best professional judgment, will not have a reasonable chance of benefiting the patient. Key things noted on the right, not ethically obligated doesn't mean you can't do it, but it means you're not obligated to provide treatments. That in your best professional judgment, asterisks including best available evidence, does not have a reasonable chance. We'll have to think about what do we mean by reasonable. of benefiting the patient. And we'll have to define what it means to be of benefit. You may all know, but just in case you don't, that each state has a little bit different sort of statutory framework around medically ineffective treatments. This comes from the California Probate Code. And it says a health care provider or health care institution may decline to comply with an individual health instruction or health care decision that requires medically ineffective health care. or health care contrary to the generally accepted health care standards. What this says, in short, is it's underscoring and writing into the statutory law that physicians can exercise their best professional judgment to determine whether a treatment might be medically ineffective, and if so, that they can unilaterally make the determination to either decline to offer or to withdraw that treatment. This is important, and it's the foundation upon this notion of futility, but it's not enough.

Clarence Braddock

So there are lots of different definitions of futility that you may have heard or read about in the literature. I'm going to give you a brief summary and my own editorial comment on what might be the most useful in this kind of situation as in this case. The first we might call physiologic futility. And the argument goes something like this. An intervention is futile if it cannot lead to any physiologic effect. An example might be doing, always remember back in taking BLS and ACLS, I'll always remember the first lecture about when you could not start CPR. And the two instances they taught us at that time was if the person was decapitated or if there's rigor mortis. I don't know, maybe the list is longer now, but that's pretty stark. So certainly, there would be no physiologic effect from trying to resuscitate someone who had been dead long enough that there's rigor mortis setting in. That would be kind of an example of physiologic futility. It also might be providing a medication that has no physiologic effect or in a situation where there'd be no. And sometimes patients and families do ask about treatments that would fit in this category. So the advantage of this particular definition is it's very clear. It's very defensible. The disadvantage is it doesn't really offer any real helpful guidance in the kind of more murky and complex situations like the case I presented to you a few minutes ago.

Clarence Braddock

So the next on the scale of definitions is the so-called imminent demise definition of futility. And it would say that an intervention is futile if it will not prevent the imminent death of the patient. So an example from the adult world, I spent many years doing critical care myself, would be resuscitation of a patient who's in the ICU with fulminant sepsis, persistent hypotension despite every pressure that's off the shelf. Certainly, resuscitation in that instance would be highly unlikely to prevent the demise of that patient. And so again, this would be an imminent demise kind of definition of futility. Again, it's relatively clear cut. There are few disagreements. Certainly from my own experience, this situation rarely leads to conflict. But again, it applies to relatively few situations. So it's a defensible definition. Certainly you could use this in your practice, but it may not provide much guidance in the kind of situations that we're presenting. The third definition would be the lethal condition definition of futility. And it would say the following. An intervention is futile if the patient has a condition that is incompatible with long-term survival despite the intervention. Incompatible with long-term survival despite the intervention. An example, again, from the adult world, I apologize, I am an internist, but you can think about your own examples, would be a patient who, advanced age, with metastatic cancer, who's admitted with pneumonia. And the question would be, providing antibiotics, is that futile? The argument here would be, because this patient has a very limited long-term survival, the intervention is unlikely, in fact, won't change that. Some would argue that it might be medically ineffective. It might be futile to provide antibiotics. So this has the advantage that you can imagine a lot more situations in which this kind of rationale could actually provide some guidance. The tricky thing is that it's fairly broad. It's fairly broad. And you can imagine instances in which the question about what counts as long-term survival, a couple of weeks, a couple of months. So again, lots of people will use this kind of line of thought as they think about the concept of futility. But I would caution that it does have the potential for being inappropriately applied to different situations. The fourth and last of these four definitions is a definition based on quantitative and qualitative factors. And it goes something like this. An intervention is futile if it has a less than 1% chance of benefit. An example would be in-hospital resuscitation and whether the person had a likelihood of surviving to discharge from the hospital neurologically intact. or a qualitative definition, meaning that there's a chance of benefit, but is the benefit, is the state of existence that the person will wind up being in at an acceptable threshold. And this is where it could be potentially relevant to our case.

Clarence Braddock

So advantages here is applicable to a wide variety of situations. It addresses both the quantitative, the likelihood piece, and the quality, the quality of life. Disadvantages are that it's often hard to find outcome data about the percent likelihood of survival. And clinicians, we're actually terrible at actually making prognoses. In fact, there was one study in which a group of physicians were asked to take the word futility and align it with a percent likelihood of survival. Futility, what percent survival is that linked to? I'm sorry to tell you that the answers range from 1% to 50%.

Clarence Braddock

There were some clinicians that defined futility as a chance of success of less than 50% or less. I think that's a little worrisome. Also, this qualitative piece can invite bias. It's essentially saying there's certain qualities of life, qualities or states of existence, which are below that threshold and for which you might assert that treatment to maintain that level of existence would be futile. But then we're making a value judgment about a quality or state of life. So I don't know if that helps. I would say that on balance, the last definition, the quantitative qualitative, with all the difficulties there, offers probably the most nuanced approach to that. But I'll leave it to you to decide which one resonates with your own views. Now, back to work. Based on what we've said thus far, looking at the medical indications, this notion of futility, Again, think for just a moment with your neighbor whether this has changed your mind about whether we should withdraw mechanical ventilation at this point.

Clarence Braddock

Okay, hold that thought. Now we're going to move on to box number two, patient preferences. And again, for those who are following along, the respect for autonomy is a fundamental principle here. And the kinds of questions we ask are making sure that if we're thinking about treatment decisions, that we've respected autonomy by involving the patient or patient's decision maker in shared decision making. There are other related questions that can come up in this context, making sure that the patient, or at least in this case the decision maker, has decision making capacity, has clearly stated the preferences, and if not, has stated preferences in some other way, if there's an appropriate surrogate, and if the patient's unwilling or unable to cooperate to explore that. In the adult situation, it's a little bit different than in pediatrics because in adults, we have really two sort of paradigms of thinking about understanding the patient's preferences. The preferred and default is the so-called substituted judgment standard. And in a nutshell, it says that to the greatest extent possible, we should try and find out what the patient's preferences are by exploring whether someone knows them, whether there's some evidence in the world of some prior statements or or hints that will tell us something about what the patient would say him or herself if they were able. Adults obviously have had a lifespan in which they may have contemplated such questions and may have said something to someone or even put something down on paper that's helpful. But even in adult medicine, there are instances where we don't have that, and we must rely on the second best, the best interest standard, which essentially says we try to imagine what would be in the best interest of the patient, sort of defined broadly. To a large extent in your profession, obviously you're relying primarily on the best interest standard, recognizing that there are some nuances, particularly with adolescents and such, with regard to consent versus assent. But we'll just say for the sake of this discussion, since we're talking about a small child in persistent vegetative state, we are going to be dealing with the best interest standard. The question of how do you understand best interest as articulated by the parents is obviously a very common and I know thorny issue in pediatrics, particularly around beliefs that parents hold for their children, Jehovah's Witness, Seventh-day Adventists, et cetera, et cetera, or other belief systems that may you find unrealistic and you may wonder whether they truly are in their best interest. We'll think about that as we go through this case. When I say shared decision-making, it's this notion of that the patient or decision makers have been specifically invited to participate. They have been provided the relevant information about the alternatives, the pros and cons, relevant uncertainties. We've assured ourselves that there's a working understanding of that information, and we've done our diligence to elicit their preferences. So in this particular case,

Clarence Braddock

we know that the parents have asserted the belief that they would like to continue treatment. And as the doctors and the team was reflecting on whether it's futile or not, the parents reaffirmed their notion that they wanted to continue with treatment. Their rationale was that they felt they had a realistic understanding. They understood that their son was not going to come out of his persistent vegetative state. Although they had a shred of hope, they were realistic. That's not always the case, we know. But in this case, they actually gave a pretty nuanced understanding of where things stood. They felt that his quality of life was something that they could pursue, more on that in a moment, and that they had established that it was possible to care for him at home. So again, quick check in. Now you know the parents that stated preferences for this patient are to continue on with a good understanding of what that means and ability to sort of accept that. So as we think about this question with the parents' preferences, We want to go a little bit beyond that to the quality of life realm. Quality of life is really at the intersection between medical indications and patient's preferences. And it's a way of assuring that we have an understanding of and a judgment, an ethical judgment about the quality of life that the patient is in and the quality of life that we expect the patient to be in with or without the intervention. So the kinds of questions are, what is the patient's current state and what is their anticipated state in terms of quality of life. And I like to frame this in terms of the best case and worst case example. What I mean by that is as I'm thinking about this, as I'm talking with patients and families, I'll think about their current state, which usually is fairly easy to describe because we're at the bedside, and think about with the intervention what's the best case scenario of how things could turn out and what's the worst case. And framing those in terms that are relatively value neutral but allow anchors for us to think about the likelihood of where we might land, and begin to make judgments about what that might be. So again, we would want to sort of lay that out and then find out from the parents what they think about those states. In my experience, it's often said, if we wind up in, say, the worst case scenario, what would be your thoughts about the quality of that life? What would that be like for you? In this case, the parents might be thinking about the quality of life that they've been experiencing for now the last year that they've come to be at peace with. They have their son, he's alive, he's at home. They have a system to provide care and they're probably hoping that they can return to that. But it's also important to have them reflect on what if something goes wrong? What if there's some new complication that emerges that makes things more difficult? We also want to explore ourselves, our own beliefs about quality of life. Our own beliefs. And I think this is one of the most challenging parts of these cases is that we consciously or subconsciously develop our own feelings about what we're seeing before us, particularly because as a health care team, oftentimes we're seeing these things play out in this room and that room and the other room over time. And there are ways in which we begin to form our own beliefs. And it's important to separate those out. Sometimes there's issues around quality of life that are that influence the treatment decisions. And so this is a very important, this third box. So in our case, the description that was provided is that he's comatose with occasional involuntary movements, does not seem to be in pain. Of course, that's often the case in patients with persistent vegetative state. He is permanently ventilator dependent. It does make him hard to move and interact with. But again, that hasn't been a problem in the past. But he really is relatively stable. except for this,

Clarence Braddock

on the ventilator, except for all the issues that we've talked about. So the judgments were that the parents felt this was, of course, very difficult, but they believed that the state of existence that their son had was valuable. It was valuable to them, certainly, and they perceived, as is often the case, that there was some existence there, something that he was deriving from the comfort of being alive with his parents in his own home. And they hoped, again hoped, best case scenario, that they could return to that. And it was worth it to them to try to get back to that quality of life. The health care team felt that at this point there was really no hope for any meaningful recovery, certainly not from the PBS, and questioned whether even from this more recent bout of pneumonia. And with each successive admission and time through our system, the related ordeal had really begun to take its toll on the health care team. Many of the physicians and nurses, respiratory therapists involved, really began to question whether this is the right thing for this child. And it was causing some significant moral distress, if you will, to the team. Now that's not to be dismissed, but it's important to separate those things out and try to address them each on its own right. So as you think about this now, we've thought about the mechanical ventilation. Evidence is that it can prolong life. Now we're thinking maybe about the qualitative futility question. We can think about that. We know what the preferences are. We've explored quality of life. We have agreement about best and worst case scenario. We have a view from the parents. We now have explored our own views. So 30 more seconds. What do you think now? Talk to your neighbor.

Clarence Braddock

OK. So maybe your thinking's the same. Maybe it's evolved. We'll find out in a moment. The last of the four boxes of the ethics workup is the so-called contextual features. And in a nutshell, this is a place where we think about all the things that are in the larger context around this case at a patient level, institutional level, community level. And they include things like, are there other interests that are in conflict with the interests of the treatment decisions? An example might be when I was running an intensive care unit. and the intensive care unit is full and there's five patients in the ED that need the ICU and are very salvageable, pardon the expression, that can actually be a consideration in the particular case. Are there other parties who have an interest? And then there's a whole host of other factors that can influence confidentiality, resource issues. I remember a case in which it was a patient with a liver transplant who in the post-operative period just had massive transfusion requirements and was using up not only all of that hospital's supply of blood products, but every surrounding hospital's supply of blood products. And so that becomes relevant. Religious beliefs, legal issues, et cetera. So there are a number of considerations. And just to give you a flavor, one consideration in this case would be this question of what is the law with regard to instances in which the physicians believe that Care may be medically ineffective, treatment may be medically ineffective, pardon me, and it's in conflict with the beliefs of the decision maker. So again, I'll remind you there's this California statute, probate code. That would be the kind of consideration we might reflect on in contextual features. So we've now gone through the ethics workup. We've thought about the medical indications, likelihood of success, what goals we're trying to achieve. We've tried to get clear about that. We've tried to get clarity around the decision makers and what their preferences are, understanding the quality of life dimension, examine what other features there might be in the context. So we've completed the ethics workup. Now, in that process, it's led us through a more structured way of exploring these issues. It hasn't necessarily provided an answer. So the next question would be, now what? And I'll talk about that. But importantly, this has provided us a lot of information. Sometimes it does actually make the situation clear. But sometimes it just provides the workup. Just as in clinical care, we do a history, we do an exam, we gather diagnostic studies. Sometimes it becomes very obvious what the diagnosis is and what the appropriate treatment is. But sometimes it adds value, but it frames more questions. So when I asked my professor and mentor Al Johnson, one of the authors of this four box method, when you get to this point, Professor Johnson, and the answer is not clear, What do you do then? And he thought for a moment and he said, he said the name of, does anyone know the name of this thing it's called? Stereopticon, thank you. Yes, he said, Stereopticon. And I said, I don't know what a stereopticon is, Professor Johnson. And this is an old device in which two photos taken from a slightly different angle viewed through this device would give a three-dimensional image. And if you're not quite sure what that is, for my generation, this is the version of the stereopticon. So I immediately could relate to that. And for maybe the next generation, it's 3D glasses for the movies or Google Glass. I'm not exactly sure. But the idea is that in each of these, it's a way of viewing a situation where you add another dimension in which the elements come together in some way that aren't sort of discernible by looking at them individually. And if you find that analogy a little bit confusing, it's OK. It took me probably 10 years to figure it out. But I would just say that the question then can be sort of reduced down to, is there something about the collection of factors in these four boxes that reminds us of other cases, of other kinds of situations where we can draw upon that guide us towards the best course of action in this case? So it comes up, this notion of paradigm cases. This is a notion that's borrowed from case law. So a judge hearing the facts of a particular case tries to see how those facts align with precedents, prior cases. And we can use that same approach in clinical ethics. We can use that from experience, from the collective experience of physicians involved. Bringing in the ethics consultant can be helpful, because as ethics consultants, we have seen a lot of these kinds of cases. But it doesn't have to be an ethics consultant.

Clarence Braddock

published cases in books and in the literature and there are a large variety of articles that increasingly where people present cases that provide a thoughtful analysis of what they did which can provide a really interesting kind of a guide. And sometimes there are court cases and we aren't used to reading legal doctrine but court cases often do also have the kind of thoughtful analysis that can guide us. And this approach is called casuistry, which if you're really interested in what I've been talking about, this is a phenomenal book, not for the faint of heart because it's pretty dense, but it explores this notion of the use of cases to divine a course of action. Very much relevant in the legal realm, and it was actually a method of reflection in the church for many centuries until it kind of fell in repute, but now it's making a comeback. So the notion is that we can gather information. We try and sort of think about defining this kind of case and think about it in comparison to other cases. In what ways is this case similar and where that other case provides us a path? In what ways might it be different and in some ways causes us to go into deeper reflection? If you don't want to read that book and you want to do something a little lighter, this book, Clinical Ethics, it's about that thick. It fits literally in your pocket. It's a wonderful book. It outlines this four box method and goes through this analysis with lots of case examples. So if you were going to get one reference on this notion of teaching ethics at the bedside, I would highly recommend this book. And no, I'm not a co-author, and I don't get any royalties. So it's just because it's a great book. So the idea is you start with the particulars of the case on the left. You think about the general warrants or rules of thumb that might guide similar cases. You come to a provisional conclusion, always trying to think about ways in which this case is different that might cause you to refine your conclusion.

Clarence Braddock

So here's my sort of, and you can agree or disagree with this, but I'm just sort of giving you an example of how I might think about a case like this at this phase of what kind of case is this. And I ask myself, what are the key ethical issues? The specific issue might be, Does mechanical ventilation in a five-year-old with persistent coma provide any medical benefit? If the answer is no, if I come to the conclusion that it's medically ineffective, then based on that statute, the probate code, I could pursue a course of action to basically say to the family, we're going to withdraw mechanical ventilation. That is a course of action that could be justifiable. If I'm not sure that it's medically ineffective, if I come to the conclusion that it does provide some benefit, then the treatment should be continued. Now, that's at one level of specificity. There are more general kinds of questions that arise in this case. What do you do if you think that the intervention is futile, yet the surrogate decision maker, the parents in this case, disagree? How do we think about that? What is the kind of maxim, the rule of thumb of what you do in that situation? And particularly with this notion of benefit, in this case, this question of is having him potentially at home in a persistent vegetative state on a ventilator is that providing benefit? That's kind of a core issue where we might find there's not a clear-cut answer.

Clarence Braddock

So again, these warrants, these maxims, these rules of thumb are not written down anywhere, but they come from the experience that we have as clinicians that we find in consulting with our colleagues, both in person, through the literature. They come from all the places I mentioned. And here's a stab at what a general warrant might look like. apologize for the length of it, but this is sort of capturing my own thoughts about this case. So when an intervention is considered medically ineffective, yet the decision maker still wants it, it's always prudent, generally prudent I'll say, to continue the intervention for now and continue dialogue until consensus is reached.

Clarence Braddock

Being mindful of the value-laden nature of the statement medical benefit, what we define as benefit because of our experience of seeing on so many patients in these situations and what the loved ones of the patient think of medical benefit may be different. We have to recognize that we have different judgments and those are very much our own values laid on a particular situation. So being mindful of the value-laden nature of medical benefit and only when multiple attempts at consensus have failed and or there's potential harm from the treatment, the treatment could be unilaterally withheld diligently following a process. So that, you think, what the heck does that mean? What that means is that we're trying to sort of find a process of a reasonably justifiable course of action given the facts in this case, given similar cases, how they might be handled, and in connection with other precedents such as the law. And interestingly, as you look at court cases, and there certainly were cases in Texas when Texas first passed its statute around medically ineffective treatment, where this is the process, this was kind of how it was approached, that to try to reach consensus, and I can say from experience, most of the time, at least in the adult sense, we do reach consensus. I know from colleagues in the pediatric world that that's much more challenging for all the reasons that you know very well. But this might be the kind of guidance that you would get in a case like this. So this is the last time I'll ask this question. I'm just curious. At this point, having gone through the ethics workup, having looked through the stereopticon, or the View Master, or your 3D glasses, how many people believe that we should withdraw mechanical ventilation at this point, just out of curiosity?

Clarence Braddock

It's OK. How many people believe we should continue mechanical ventilation at this point? How many people are still not sure? Fair point. So again, the point here isn't what is the right answer, because I honestly don't know what the right answer is in this case. I think because it's one that's Whether, as we said, the key issue is rooted in the value judgments made by the family and the parents and those that maybe we might make, it's not clear. But I would sort of suggest that at least going through this ethics workup has highlighted the issues that we can explore, we can find is there evidence. For example, suppose we found a paper that survival in PVS for a child of this age would be three months. That might change things. So going through that structured analysis potentially provides us insights which can get us to a place It may even be the same place we started, but the foundation for that position is much stronger.

Clarence Braddock

So hopefully at this point you now feel you've got a sense of this framework. Again, the book Clinical Ethics is a fabulous resource should you be interested in using this framework in your own work at the bedside to be able to see how that framework is connected to core principles and the notion of how it might be valuable in applying to cases. Lastly, I want to just acknowledge this case came from a wonderful resource from the AAP from these three authors. It's a case guide. There's tons of different cases with references and analysis. So should there be interest in sort of exploring, having more of these kind of conversations within your program, I think this would be a great resource. So with that, I'll close. Thank you for your attention. I'd be happy to take any questions or comments.