Good morning, everyone. I'm Alex Kahn. I'm a pediatric intensivist and bioethicist practicing in Missoula, Montana. Interestingly, I think Wynne and I are going to be, I'm going to be covering some very similar topics Wynne had covered, but in a slightly different way, which I think can be really helpful and useful to get different perspectives on some of the same stuff. I'm not going to disagree with anything Wynne said. I thought everything she said was brilliant, but just maybe some different foci. We'll see. I have no disclosures. So when we think about medical decision-making, one of the big questions we look at is, well, what are the goals of medical decision-making? And I will say there's no consensus about this. So different people look at different goals. Some of the things that are the most common things that people talk about are decisions that are consistent with the patient's values, goals, beliefs, and preferences. Decision that's informed by the best medical evidence. Decision process that's geared to the patient preferred way of making decisions. Minimizing decisional regret. And it's interesting, Wynne talked about this, and I think this is so important. Often what's most important to patients and families is the relationship and the process rather than the final decision. And when we talk to families after they've made difficult decisions, and we say, how do you feel about that? It's really interesting. They never say, well, we made the wrong choice. Like, I virtually never hear that. Or, you know, we made the right choice. What they tend to talk about is, well, when the doctor came in, he so cared about my mom, and it was clear that he really cared. Or when the doctor came in, she really cared about my child, and I could tell that, you know, we were really in it together. And it's that relationship piece that's so meaningful to patients and families. And we often, from a clinician perspective, we don't think about it so much. We think about the decision that we need to make rather than building those relationships. And so that's a really important thing to think about. So the old paradigm, and I'll call it that even though some people still use this as their primary paradigm, is this principalism concept that Beecham and Childress put out, respect for autonomy, beneficence, non-maleficence, justice. And I will say that's a great paradigm if you are a highly educated white man, and it works really, really well. But the reality is when we're dealing with parents or family members and surrogate decision makers and patients who are not over-educated, highly upper-class white people, they tend to think a bit differently. So the newer paradigm that we think about is what's called relational autonomy. And a lot of this really comes out of the feminist ethics literature. One of the greatest founders is Alison Jager, a bioethicist out of Colorado, who really emphasized what she termed feminine values of family, interdependence, community, and emotion in contrast to what she deemed as masculine values like independence, autonomy, separation, and reason. And when you talk to most actual people, they focus on the relationships, on trust, on communication, rather than acting as an autonomous decision maker. So there's been a few studies looking at how surrogates of ICU patients actually want to make life and death choices. And these are the three that I've been able to find. If any of you know of more, please let me know, because I'm always looking for these. And this is what they found. So the Johnson study was in three adult ICUs in the San Francisco Bay Area asking surrogates of adult patients about how they would like to make withdrawal of life sustaining treatment decisions. The Madrigal study was in a NICU asking parents how they preferred to make the most difficult decision that they faced in the NICU. And then the Weiss study looked at preferences for a number of different types of decisions. And this is focused on the decisions to withdraw life sustaining treatment. And what we see is that some surrogates want to decide independently. The majority kind of fall into either the physician making a recommendation and them deciding or a shared responsibility for decision making. And then some fall into this more directive. Either the physician decides considering the family's opinion or the physician decides independently. So this is kind of the range of what we see. Now what I will say is there's been very good data that what people say they would want, how to make decisions, does not actually correlate with how they ultimately make decisions in real life scenarios. And there's been some interesting data. So what we really need is we need someone to study how families actually make these decisions with their providers in the ICU setting. That's a great study. I have lots of great ideas of how people may want to do that. If you are looking for a great research project, it would be fantastic. So I encourage you to think about that because we desperately need that study. So when I already showed this slide, this is the range of decision making in one conceptualization of it. And what I want to focus on is these areas in red. So when we look at the studies, somewhere between 5% to 20% of surrogate decision makers wanted a provider directed decision making process for the withdrawal of life sustaining treatments. That's a pretty big number. So imagine your ICU admits 5,000 patients a year. So we're talking somewhere in the range of 500 families a year want a physician directed decision making approach. That's a big number. And so that's why it becomes really important for us to figure out how do we make decisions with these families. And so I'm going to be talking about informed non-dissent because that's the model that is endorsed that I think works really well for this. So when is informed non-dissent appropriate? While discussing the options, the patient or the patient's representative seems to favor a more passive role in decision making. The clinician discusses with the patient or the representative how they prefer the decisions be made, whether they prefer to make the decisions themselves, share in the decision making, or have the clinician bear the major burden of the decision making. And if it becomes clear that the surrogate prefers to see decision making to the clinician, then informed non-dissent is an appropriate model to employ. So what are the things that we think about? So basically, what we do is we have discussions just like we would in informed consent. So we provide information to the extent that the surrogate wants that information. And just like in informed consent, the surrogate or the patient can say, this is more information than I want or need, or I can't hear this. And that's OK. That's their right to say that's too much. But we give them as much information as they want. And we ask lots of questions to get at what is the patient's belief system? What are their values? What are their goals? And then we make a decision marrying our best medical judgment and knowledge with the patient's values, goals, beliefs, preferences. And then we say, this is the decision that I'm making. And this is why. And then we very explicitly state, if you disagree with that, just let me know. And we'll do whatever you think is best. And we will all continue to support you. We will respect your decision. And we will do whatever you think is best. And we will continue to care for you and your loved one. And that's really important so that we are very clear with surrogates that they can and should feel comfortable disagreeing with us. And we need to make that very explicit. Otherwise, a lot of families won't feel comfortable doing that. So what's the ethical justification? Well, we're supporting the patient or their representative in the decision-making because that's key. As we know, many surrogates prefer to see decision-making to the physician. And requiring the surrogate to make the decision when they prefer a more passive role, that is paternalism. Because what we're saying is, we know better than you how to make decisions. So you have to do it our way. That's paternalistic. And that's really strange for people to think about. Because so many clinicians feel that patients should make their own decisions. And surrogate decision-makers should make decisions for patients. And we shouldn't be doing that for them. And so when they want us to do it, we push them. And we say, no, no, no. You have to do it. I'm not going to do that. And part of the reason is, quite honestly, it's really nice not to have to make those decisions. Making really tough decisions is really difficult. And it's really burdensome. And if it's a life and death choice, and it's agonizing to make that choice, if I push that decision onto the family, then I can go home at night and sleep just fine. Because I didn't decide to turn off the ventilator. That was their choice. I just went along with it. And if I bear the burden of making that choice, then I go home at night. And I toss and turn. And I wonder, did I make the right decision? And so bearing that burden is hard. And so a lot of clinicians don't do it. And just to be clear, informed non-dissent is officially supported by SCCM and ATS in the guidelines. But there are some caveats. We have to be really careful that we're not forcing our choices onto families. So many patients and families are very intimidated in medical settings, particularly in the ICU. It's really scary. And they're very differential, especially to physicians. So it's extremely easy for the health care team to inadvertently take over decision making when actually the surrogate prefers to make those decisions themselves. So we have to be very cognizant of that and very careful. And we have to learn how to be comfortable making these difficult choices. This is really hard to teach to fellows, junior attendings, and senior attendings, how to feel comfortable making really tough choices for families. Because for a very long time, we trained doctors that that's not what we do. And so we need to flip that around so that we can actually provide good care and good support to families. And that's tough to do. Here's a reading list. Feel free to pull this up online because there's a lot here. And with that, I will end and pass the mic over to Mary Faith.

medical decision-making

relational autonomy

informed non-dissent

patient values

bioethics