 For this session, and that is Professor Dan Brudney, Dan's a professor in the Department of Philosophy in the College. He's associate faculty at the Divinity School and the McLean Center. And Dan's interests include patient autonomy, conscientious refusal by healthcare professionals, and conflicts of interest in the clinical context. And I must say, as someone who really enjoys going to clinical conference, the case conference, in hearing Dan's perspective, as a non-physician, very thoughtful philosopher, looking at what many of us physicians feel like, well, what are you talking about? But he always makes incredibly insightful comments, so it's my pleasure to welcome Dan. Thank you, Peter, for that very sweet introduction. And thank you, Mark, for inviting me 10 years ago to be part of the McLean Center. It's been really a very rewarding and wonderful 10 years, so I thank you. I thank the McLean's for their support of the Center. What I want to talk about today is a problem with our practice of surrogate decision making. Now, I should say I have no slides. I'm a philosophy professor. It's hard to get a picture of an idea, so I'm just going to read you the paper. And I want to be very clear about the kinds of cases that I have in mind. I'm not concerned, for instance, with the surrogate who avoids talking with the medical team because she's trying to avoid being bullied into giving consent to what the team wants to do, say, to reduce care for the patient or the surrogate wants care to continue. In such a case, the surrogate is in fact doing her job. The team just doesn't like the way that she's doing it. That's different from other cases. It's different from the surrogate who never shows up because she's busy or can't be bothered. It's different from the surrogate who doesn't engage with the team because she has a personality disorder. It's different from the surrogate who seems to refuse to understand or to be unable to understand the clinical situation. And I'm sure all you clinicians can list many variations on these themes. The point that is that at present, I think, and this is what I'm fleeing from my 10 years at CASE conference, is that we don't have an adequate way to deal with these problematic cases. Now, there's one clear disanalogy between the situation with patients and the situation with surrogates. With patients, there's a process for cases in which the patient's decision making seems problematic, one test to see whether the patient has decisional capacity. Short of going to court, there's nothing analogous with regard to surrogate decision makers. And this points to the problem that I want to talk about, but I want to get there by noting another, and I think, deeper disanalogy between patient and surrogate decision making. Now, in one sense, what I'm going to say strikes me as completely obvious. Now, in some ways, that's sometimes good for philosophy. You think things through, clear away all the filters, and it all seems to fall into place. And Karen Devin, I think, was sort of referring to this when saying that in the ethics M&M case conferences in Toronto, part of what people were able to see is things they already knew, but that they hadn't quite put into words. So bear with me if all this seems to be something you already at some level know. I want to start with some remarks about the role of rules versus individualized judgment and social practices. I'll then note that the current practice of patient's decision making is based on two premises that jointly but only jointly give moral support to that current practice. I'll argue that our practice for surrogate decision making is based on merely one of these premises, and I'll argue then that this means that the practice may legitimately, that is morally legitimately, be altered. Finally, I'll make a proposal about how to change things so that we do have an adequate way to deal with the problematic surrogate decision maker, and then I'll close by noting the shortcomings of my own proposal. The details of my positive proposal are the least important part of the talk. The real force is my claim that the moral basis for patient decision making does not carry over surrogate decision making and therefore that is morally permitted to seek to amend existing practices. I should say I'm basically talking about surrogate decision making for adult patients. I think my analysis also points to issues about how we should understand parental decision making, but that's not really where I want to go today. So I want to start by talking about general rules and individualized judgments. There are three models. There's pure rule application, there's pure individualized judgments, and there's rules constrained by judgments. With pure rule application, we have a rule that applies to a given situation. One needs to exercise judgment to know that a given situation is the kind of situation to which the rule applies, but once we make that judgment, we simply apply the rule. An example would be the rule to maintain confidentiality with regard to patients who are HIV positive. When that rule is in effect, physicians are not permitted to decide case by case whether it would be best to disclose the patient's HIV status to the patient's sexual partner. The rule has no space for individualized judgment. The physician might urge the patient to tell his or her partner, but the physician may not tell. We use the pure rule application model in situations where for one or another reason, we think it would be a bad idea to permit individualized judgments. We might not have confidence in people's individualized judgments in these areas. We might worry that permitting such judgments would undermine the benefits of the rule as a whole. We might think that some other important value would be violated by individualized judgments. The point is that we decide that for a certain class of cases, a certain rule will simply be applied. Alternatively, we might think of a model of purely individualized judgment. Now, with that model, we have no rule at all. It's actually not easy to come up with examples of human life where we simply decide purely case by case. Imagine a quarterback who calls each play without any reference even to rules of thought, such as if you need to get in a lot of yards, yards you should pass. You could sort of imagine such a being. Quarterback's not going to win a lot of games. But that would be a kind of example of making decisions based purely on a case by case decision with no rules of any kind in the background. Finally, we get the third model, and this is really what most of us do in many, many situations in our lives. We have a rule or even multiple rules, but we permit them to be constrained or to be overridden in particular cases by individualized judgment. As I say, much of life is like this, and I assume that much of medical practice is like this. We use rules, but at times we constrain or override them. Turning now to patient decision making, let's note the following about our current practices. First, it works on the pure rule application model. Once it's accepted that the patient has decisional capacity, the rule kicks in, and there's no room for the physician to override it. The physician may talk to the patient, try to persuade her to decide in a particular way. This is where these days people like to talk about shared decision making, but at the end of the day, the patient has to consent or refuse. The second thing to note is that this rule of patient decision making is built on both a moral premise and an epistemological premise. The moral premise is that an individual has a moral right to accept or to refuse medical treatment. Patients as an agent, agents have dignity, and dignity involves an entitlement to make certain kinds of basic decisions about one's own life. We don't permit forced marriages that would offend against an agent's dignity. We also don't permit forced medical care that would similarly offend against an agent's dignity. That's the moral premise. The epistemological premise is that a patient with decisional capacity knows better than the medical team what's in his or her own interest. So if a basic goal of medical care is to promote the patient's interest, then the best way to attain that goal is to have the patient ultimately make the medical decision. Neither of these premises is important to be aware of about how we do things now. Neither of these premises is a conceptual truth. Each is making a substantive claim, and at other times and places, each of these claims has been rejected, but our current practices, I think, do rest on these two premises. Now, an epistemological claim here that the patient knows best is an empirical generalization. It says that in most or insufficiently many cases, the patient knows her interest better than the medical team does, so we should let the patients aside. But as with any empirical generalization, in a specific case, this claim might be wrong. Sometimes the doctor really does know better than the patient. Again, I expect you clinicians have plenty of cases that you can think of in your own practices where you truly felt that you had a better understanding of what was good for the patient than the patient did. It's precisely in such cases that the patient choice is also based on, that it's important the patient choice is also based on a moral principle. A moral value at stake here, the value of agency, is thought to be sufficiently strong that it leads us to believe that the patient should be permitted to make the medical decision, even when there's sufficient reason to think that she's making a foolish decision. Now, one could deny that the moral force of the agent's dignity is really strong enough so that we should have a role in titling the patient to choose even when she makes a foolish choice. This is what Dan was bringing up just a moment ago in one of his slides under traditional medical values. We could say that our current practice of patient choice does not have an adequate moral basis. I don't want to go there. I just want to note that our current practice right now is premised on these two claims. And because our practices are built on these two premises, the decision is taken out of the patient's hand only when we think that the patient's agency is sufficiently undermined that those premises don't obtain. That is what it is to say that the patient does not have decisional capacity. When it comes to surrogate decision-making, things are different. When the patient cannot decide on what basis is it determined who will make the medical decision, why should it be the spouse or the sibling or the child? Presumably, the reason is epistemological. That is, there's no moral right at stake here. A statute might make some individual the surrogate, and so give that individual the legal right to make the medical decision, but there's no ex-anti-moral right that such a legal right be in place. The reason for giving, say, the spouse the legal right to make the decision is the belief that the spouse has knowledge, but the physician does not, similarly, with giving, say, a child the right. So let's take two people, a young man, Bill and his mother Jane. Time comes when Jane needs medical treatment, but no longer has decisional capacity. Bill is Jane's surrogate decision-maker. We think this makes sense because we believe it's more likely that Bill knows key things about Jane than that the doctors know them. He might know what his mother has, in fact, said in the past about the treatment or lack of treatment that she would like. He might know what his mother would say about treatment or lack of treatment. About these matters, Bill is likely to be in a better position than the doctors to know. And in addition, he's likely to know better than the doctors what's in his mother's interest. It's not that Bill has a moral right to decide for his mother. The usual understanding is that the law gives Bill the legal right to decide because it thinks he's likely to be in the best epistemological situation. Now, I actually want to leave some time for questions, so I was going to just bring in a couple of cases here in which we imagine Bill and his mother and in different ways in which Bill might be going wrong. Ways in which he might think that it's important for his mother to refuse treatment, that the doctors think is good for his mother, that they would preserve her life. That would be one place for the doctors would disagree with the surrogate. Another kind would be where he's simply not showing up and is not responding to phone calls and so forth. What I want to point out is that although our current practice of patient decision making is on a pure rule application model, but so is our current practice of surrogate decision making. It too uses this model, but that makes little sense given the disanalogies to the case of the patient. The first disanalogy is the one that you all, all you clinicians know from the start that with patients there's a way to test for decisional capacity with surrogates, there isn't. But the second disanalogy is that the patient has an ex-antimoral right to make decisions for herself. That's what kicks in when you think the patients is making a foolish choice. The surrogate has no moral right to make decisions. The surrogate now has a legal right, but that's exactly what we're interrogating. The surrogate has a legal right only on the premise that she is in the best position to do a good job. When in fact there is sufficient reason to believe that the surrogate is not doing a good job, there's not, right, so we have patient making a bad choice, surrogate making a bad choice with patient and default to the patient's moral right, with surrogate there's no moral right to default to. So it's not at all clear why we in fact have the current practice. It's not clear why we're not thinking of amending the current practice of surrogate decision-making to try to handle those cases where it seems clear that the surrogate is not doing a good job. Now I'm going to make a quick proposal about what we might want to do, but I want to be clear that it's just the first step and really what I want to do is open up a discussion about what should be the way in which the surrogate's decision-making is constrained. So here's my proposal, but as I say it's absolutely defeasible, I just want to get something out on the table. Let's suppose first that the attending physician is permitted to decide when it's a good idea to suspend the surrogate's authority, when the physician makes such a judgment, we would then, second, bring in a multidisciplinary team that would make the treatment decision in conjunction with the surrogate. Ideally the team would work toward finding consensus with the surrogate, but in a pinch something like a majority of the team could make the needed decision. Now there are drawbacks to this model. This is the basic drawback that we get when we depart from the pure rule application model when we move into a situation where judgment is introduced. Here we have judgment at the moment where the attending physician decides when it's proper to suspend the surrogate's authority to bring in a multidisciplinary team, and that team will have to make a judgment about what's to be done. It's the nature of judgments that they can go wrong in many ways. They can be hasty, they can be prejudice, they can be based on bad information and so forth. There will be the worry that physicians will bring in the team too soon and too often, thus in practice taking away instances of perfectly legitimate surrogate decision making. So what I'm proposing has its own risks. It has its risk for any proposal along the lines that I'm giving, even if you don't like the particulars of mine. Still, the question is not whether there's a process that's perfect. The current practice seems far from perfect. The question is whether on balance, changing to some form of a rule constrained by individualized judgment model, my proposal of some other will be an improvement over our current practice. Thank you. We do have five minutes for questions. Good. Yeah, why does he get questions and not me? Just kidding. Yeah. Sorry, I tried to call. Yeah, I understand, but you did it. But anyway, the moral authority, I don't understand why surrogates don't, why you decided that surrogates lack moral authority. I mean, if they're acting as true agents for a patient, why don't they have the same moral authority as the agent? They're acting as, they are not themselves the agents. Right. So, their authority is derivative. It's based on the premise that they are, either have accurate knowledge of what the patient wanted, accurate knowledge of what the patient would want, accurate knowledge of what's in the patient's interests. Now, in various cases, none of those might obtain. That is, especially when we see surrogates who don't even return the team's phone calls, who don't come in to make judgments. So, yes, they are privileged with respect to knowledge of what the patient has said, and presumably of what the patient would say, different things. And in those cases, the fundamental premise behind giving them authority does obtain. But if they don't do their job at all, or frankly, they might not be accurate about what's in the patient's best interest, in part because they might not understand the medical situation. In those situations, then it's not clear why they should be the decision-maker since the premise behind making the decision-maker has been defeated. Safi Fedsen from Baylor, down in Houston. Just to reference the surrogate decision-making and the surrogates not available, there are different places out of address at Tennessee, for example, in their Healthcare Act of 2004. They don't list a surrogacy hierarchy. They list suggested surrogates, and one of the criteria by which the attending physician, once they deem that a surrogate decision-maker is appropriate, they can choose the person. So if someone is not reasonably available, so there are different, depending on state statutes, there are different ways so that if someone doesn't return X number phone calls, you can say a friend who is at the bedside is the best surrogate decision-maker. So your model, I agree, when a surrogate is there and is trying to interact but just doesn't get it or a questionable capacity, that may not be addressed, but the other sort of unavailability is addressed in different legal realms in different states. Fine, terrific. As I say, I have no stake in the particulars of my positive proposal, Justin, sort of saying that it is morally okay to try and tinker with the way the system works because the surrogates don't have their own moral, more ex-ante autonomy right at stake. So I'm happy with that. Last two people, sorry about that. Okay, then I won't respond to Savi. But Dan, if I understand the first challenge is based on the physician disagreeing with the surrogate and I would just suggest that you have a prior challenge which is anytime the surrogate's wish is known to contradict the prior advanced directive of the individual patient, that would be an almost more automatic challenge. I do accept that, that is, one thing that surrogates are supposed to do is to be a way to give effect to what decision the patient has already made and that's supposed to have priority, that's supposed to be as a way the closest thing you can get to the patient making the decision herself. And so if the surrogate is clearly going against that then she is not doing her job, so I would accept that. So Jim Kirkpatrick, University of Washington and I have a related sort of comment is we've had a number of cases in which the surrogate will outright tell us, I know that the patient wouldn't want this but this is what I'm deciding. And the question is, and I think it's fairly obvious to that point and I don't know what we would do then to deactivate the surrogate in a sense but the one thing I'm a little bit afraid of is if we come into it with that that we will squash that discussion. And so I think there needs to be sort of, some of these are iterative processes, especially if there's no advanced directive where the patient's wishes are really not known and I wonder if a mediation model might be a little bit better. I'm surely open to that as I say, I'm less concerned with the specifics of my model than their being some model to get the team out of its bind, right? As I understand it in most jurisdictions the only thing you can now do to remove the surrogate is to go to court, which is an elaborate time consuming thing. So the point is that there should be as a moral entitlement to have legislatures delegate some form of constrained authority. Precisely what form? Where you don't squash the surrogate's legitimate role seems to me up for grabs. The point is I just want to point out it's okay to think in terms of how you should tinker with this. Yeah, absolutely, but I just wouldn't want a situation in which we kind of, oh you said the wrong thing so now you're out and we lose that rich discussion that can happen in which most of the time the surrogate actually comes around. Right, I mean if you could start with mediation and that's a great way to start hopefully it will be successful. It presumably won't always be and so you need a fallback as well, yeah. Judy Wallachy, former fellow and I'm actually speaking out of my experience as a chaplain at Lutheran General Hospital. Two things, it occurred to, this is actually a follow up to something that Mark said, but it's been a question in my mind since 1995 when my mother died. She had a stroke when she was being prepared for colonoscopy and she had made very clear to her doctor that she wanted absolutely nothing done. And so at the time that she had the stroke it was in the evening and her primary care physician was not there and so it was somebody that was filling in for him called, asked me to come to the nurses station and said this is what your mother wanted. This is that she didn't want anything done and that he just wanted to make sure we were all on the same page which suggested to me even at the time that there was a possibility since we knew that there was something that could be done immediately especially since she was in the hospital that my decision might be, might overrule hers. And it really seems to me that that's a question here. Is that, as the surrogate, would the doctor have accepted something that was obviously different from what my mother had specifically told her own doctor and who had written orders for an hour to make sure that nothing was done? Thanks for that. So I gave that little sketch of different models of decision making because each of them has its problems. We go to the pure rule application model when we are scared about situations where individuals will take the decision and throw their own hand and we don't want that to happen and that's what you would be worried about and so the surrogate decision making is on a pure rule application model now in order to make it the case that you can decide for your mother and that the doctor does not override that. On the other hand, we all know that sometimes rules need to be modified, that there are some cases where if you just, this is known since Aristotle, if you just apply the rule you're gonna get a problematic outcome and so the judgment call is always how do you tinker with the purity of the rule application such that you minimize the bad outcomes? You'll never do it perfectly and my proposal is simply that it's time to start figuring out how to tinker with the surrogate decision making model to try to make it a little less imperfect. Thanks. So next speaker is Dr. David Meltzer. Dr. Meltzer is professor of medicine in the section of hospital medicine here at the University of Chicago. He also has a PhD in economics which is very intimidating to me, I have to admit and has joint appointments in the Department of Economics in the Harris School of Public Policy. He's also director of the Center for Health and Social Sciences and his research focuses on health policy and economics with a particular focus on the cost and quality of healthcare. David. Thank you.