Is the Surrogate Trustworthy?

All right, so Tyler, today I get to give my own case for this season of bioethics for the people, but before we launch into it, I want to ask you, how do you teach people how to tell stories? In your med school, do you ever talk about storytelling with your students? Yeah, we do a couple of different points in the curriculum or students have the opportunity to do it. There's a couple of required sessions where we talk about big picture, narrative, medical humanities, healthcare humanities, types of ideas and principles. But in the fourth year, our medical students have the opportunity to take an elective on storytelling. And the way that I teach that is to give them a couple of different styles of storytelling. So short stories, we also look at a really interesting format or framework called the 55 word story. Are you familiar with that? I'm not. So it's this format, almost like a elongated haiku where it's a writing exercise where you have to tell a story or describe something and you have to use exactly 55 words, no or no less. And it's a really interesting process to watch students or people who haven't done this before to do the word smithing and the condensing and reorganizing in order to hit 55 words exactly. So that's one of the tools we do. We use in that elective to help people think about words and think about being concise. We also talk a lot about the ways in which stories get interpreted and not just interpreted by the person who's listening, but the filtering and synthesizing and processing work that happens to the story teller themselves. So all of the information that goes into your daily life, you have to condense and reorganize and package in a way that makes sense in a story or in a narrative. And that process is really, really complicated. But also it includes a lot of issues about bias, a lot of opportunities to talk about what information is important, but also appropriate to share two physicians or two patients. Yeah, I really like storytelling in the clinical setting. One of my favorite authors is physicians who works in the spaces named J. Baruch. Are you familiar? J. Yeah, he writes short stories predominantly and publishes books, but he said once and I was at a meeting where he was giving a talk and he said that as an emergency medicine doc, he spends his whole day going into and out of people's stories. It's just constant storytelling because he has to distill and absorb so much information so quickly and trying to figure out what's the important information, what's kind of a rabbit hole or red herring that he has to avoid. And then he has to tell a story back to the patient. So hearing him describe that process, not just as a brilliant short story writer, but also as a physician was really eye opening to me. J. That's really cool. Yeah, I mean, the only thing I'll add to that is just a plug for so my sister Darian has been on the podcast a couple times and she does workshops with patients and people with chronic illness where she helps them to narrate stories about their illness by getting them to do art with her and create these artists books where she gives them prompts and they create art and then they sort of narrate their story after they've created the art. And I've she's done this for some of my students and I've seen her do it with others and just the tremendous like opening that creates when you're able to distance yourself a little bit from the story by creating something that's not using words and then putting words on top of it. I've heard so many people say I've never been able to talk about this before, but because I made the art first, it was then it opened something in me to then talk about it. I thought that it's so lovely. So I think that there's ways in which you can kind of open up those narrative spaces by doing something other than word work first. Right. Yeah. Yeah. That's great. Good old Darian. She's the best. She's the best. Yeah. She's a good egg. She is. Well, so today storytelling and it's sort of people's ability to do that will come up in the case. So get ready for what is it is a sad case, but not quite as devastating as some of the other cases that we've heard. Good. Not not quite get a ruin everyone's week. That's right. So get ready for an interesting sad, but not devastating case. Great. Welcome to this episode of Bioethics for the People, a podcast where we discuss bioethics in all the complex questions related to medicine, health and society. I'm joined by my co-host, clinical ethicist extraordinaire, sometimes lawyer and all around boss at Western Michigan, Tyler Kib. And she is the Bertha of Babies, the Bertha of Books, the Baylor Bear, the bell of bioethics, Dr. Devon Stoll. All right, Devon, this is an exciting episode for us because I get to interview you or at least you're going to tell me about one of the cases that you think about still. Yeah, I've been thinking about which would be the best case for this and I came up with one that'll be really curious how you would have handled it because I'm not sure we did everything right. And I think that there's like some lingering questions. So at the end, don't forget to ask me. I think there's like three big questions I still have about this case that I'll be curious if you have responses to. All right. Well, I have full confidence that you did everything correctly, but let's give it into it. Right, Professor Stoll, tell me about your case. All right. So I'm going to position this case in like three movements or three big ethics questions that came up. Three, I know. Three acts. Three acts, three acts of the play that is this case. And I wasn't involved in each of the stages because this happened over several weeks, but there were kind of a couple of like twists that came up that was like, oh no, what do we do now? And as often happens with these more complex longer cases. So the case comes and Tyler, you'll appreciate this. I just remember, so this was many years ago, but I worked in a place where so anyone could put in a console in the chart and it would come to us and we would ask, what's your ethics question, which was always funny because it was never an ethics question. It was always just some sort of like kind of vague statement. So I believe it came to us from the neurology team as something like case of possible euthanasia. Okay. In my experience, almost without exception, when somebody in the clinical setting starts talking about euthanasia, it's not about euthanasia. It was definitely not about euthanasia. But it's a fun buzzword to throw out there to get the ethicists and everyone else's heart beating. Oh, for sure. So you don't often see that and I've never worked in a state where euthanasia was allowed. So, you know, it's definitely grabs your attention. Like you're not ignoring this ethics console. Oh no, what's going on here? Yeah. Okay. So just to clarify, euthanasia is not legal in any state. Oh, I'm sorry. That's right. Yeah. It's, I've never worked in Canada or the Netherlands. Right. So, all right. So tell us about this case. Okay. So, we call and we're talking in neurology. So this is a man in his early 20s, also a red flag for me, right? You don't get a lot of ethics cases with patients this young. So he was in a motor vehicle accident. He was a pedestrian who was hit by a car and he suffered a traumatic brain injury. So he's currently in the intensive care unit on a ventilator or really uncertain about prognosis because of the brain injury. And after three or four days, so he's found he doesn't have a wallet. He doesn't have any identifying information. And so we don't know who his people are. It takes a few days, but our team is amazing and they scour social media somehow and they come up with family members. Wow. Okay. They find these family members, which I always just find totally amazing that we can, you know, that these social workers and the case managers are able to sort of find family. So, after a few days, we find family. We find out he has a grandmother that basically raised him and a sister. And do we find out from them? And you know, the first question is like, why weren't they looking? They weren't looking for him. And they didn't know he was in the hospital because they're estranged from him. He left home when he was about 16 and there hasn't been a ton of communication with him in that time. They saw him a couple years ago at a funeral, but they know that he is a drug user and that he is recurrently homeless and that's sort of like their relationship with him. But they start, what raises a flag for neurology is they start asking about organ donation and neurology says, whoa, organ donation. We're not there yet, right? It seems like the family is you know basically thinking he's gonna die and we keep trying to tell them that we're not sure about prognosis and they keep bringing up organ donation and that's a red flag for us And so they're thinking about euthanasia is you know if we just remove event or allow him to die at this state at this stage and in the possible recovery that would feel like we're killing him Okay, all right, so just to recap. We got a gentleman in early mid 20s who was part of a pedestrian versus motor vehicle accident, which he did not win and he is in the ICU with a traumatic brain injury Right, that's right. Okay, so he has a documented history of drug use drug addiction possibly and is has an un uncertain housing situation and parents or family members have been contacted and they are asking about organ donation, which is alarming the neurologists so So that sounds right so far. That's right so far. So the initial question then coming up is So neurology wants to wait of course to sort of learn more about recovery the longer you wait the more certain you are about recovery If this had been an anoxic brain injury if it had been sort of about organ failure That's really different, but traumatic brain injury on a really young person is recoverable or can be recoverable and neurology is you know throwing out these pretty extreme cases where I had a patient very much like this who now is in college and fully recovered and Right, so they're thinking about those extreme cases where it's possible that somebody like this might fully recover from this injury and it's too soon to say yet that they won't they want to give it 12 months Wow, okay, yeah, that would be sort of the standard is that you can't really have a firm handle on prognosis until the 12 month mark and the family's like No, that's way too long. Yeah way too long Yeah, we wouldn't want to wait that long. He would never have wanted to be in a hospital He you know, he we're sure that he wouldn't want to be here So we're not comfortable with this whole 12 month thing, you know, so they're not comfortable with that and so there's this impasse So would it be killing if they wanted to stop these treatments now? That's sort of the first ethics question gotcha So just to just to clarify a little bit what interventions or what's going on with him? So he is he intubated is he like what kind of life-sustaining treatment is he getting right now? Yeah, I think at this point it is just the intubation and with the ventilator. Okay, so he's intubated on a ventilator doing his breathing for him and In these situations where there's brain injury the the difference that you're that you're kind of describing is between brain injury because of a lack of oxygen for whatever reason it could be you know, drowning it could be a cardiac arrest versus brain injury because of trauma right and What's interesting to me about these cases often is that one side or the other when we're kind of facing the the patients families versus the healthcare providers one group tends to lean more heavily on data and predictability and prognosis And if it's the case where the the team is like well, I don't know if we're doing the right thing I don't know if we should continue then The family often responds by saying well, you can't be for sure here all these anecdotal cases over recovery and But it sounds like the opposite is true in this case that the family is kind of putting up some Concerns saying wait a second. We're not quite sure that what you are describing is something number one that he would want And number two would lead to an acceptable quality of life for him at the end of it And so it's kind of a little bit reversed from most cases at least yeah Yeah, I think that's right and I and it might be in part because it's just unusual to have such a young patient with such with this kind of injury Like neurology is not as used to these patients and they had just happened to have these anecdotal experiences And so they're just not ready to give up on this patient yet or that's how they would describe it Right, not ready to give up on him. Whereas the family is has a very different orientation toward him Yeah, this reminds me of a case I had recently and now to get off track, but similar, but it was a Teenager so the mother was making decisions for her and she went in a car accident similarly and The mother's position she said if my daughter doesn't recover to 100% If she is not back to the way she was yesterday Then none of this is appropriate none of we want none of this right and so it very You know similarly troubling types of Expectations or so okay, so what did you do? So you got this case and then what? All right, so so this first question is it killing okay? so and and I had been told not only through this but also through other care providers that that neurology was saying this out loud in front of other physicians Where worried we're killing him and I I want to take that really seriously Yeah, because any of our care providers who feel like they're killing a patient You know whether that's true or not we need to take that very seriously because nobody wants to feel like they're killing their patient Right, so you need to like definitely attend to that So we work with them we get palliative care involved who's also talking to the patient's family at this point to talk about the differences between Allowing to die and killing and as part of that conversation we're really trying to tease out from neurology like what they think Why they think they need such a long time for prognosis because palliative care is not so certain that that's the amount of time that you're gonna need to say Anything definitive, you know, maybe there's nothing definitive that can ever be said until they totally recover or don't but Do you really need 12 months to have some idea about Possible recovery for so they're getting pushed on that question and We're trying to describe the differences between like appropriate amounts like there is a kind of appropriate allowing to die and an inappropriate allowing to die So if this was something really easily Treatable, you know if you had an infection that could be treated with antibiotics and if we didn't treat it He would die and the family saying no we're really concerned Right that could be sort of a passive way of allowing him to die that would be inappropriate But this doesn't quite feel like that this feels like it's a it's a significant injury with significant burdens of hospitalization and medical support in which case We understand the sort of trepidation about taking away Those interventions too soon those life sustaining interventions too soon But we also want to allow room for down the line this being an option if we are convinced that that's what he would have wanted And so we want to come to some idea about how long we would allow this to go on before we would allow the family to make that decision I think we're all kind of an agreement that three four days is too soon But a year might be way too long. Yeah. Yeah, that's a tough bind to being it because Often when families are in this situation particularly when there's kind of a trouble the history within the relationships that Definitive like we want we need to make a decision. We need to you know kind of know what the plan is know what moving forward looks like It is something that families are really interested in and motivated in trying to accomplish but at the same time there has to be some degree of allowing for more information more clinical data more Intervent no diagnosis to have a clearer picture of the full prognosis because it's really hard to make decisions About what somebody's eventual quality of life is going to be or whether the interventions are appropriate or not if we don't know what that prognosis is right and so it makes perfect sense that the healthcare team would want You know some time to get some more information That would inform better inform a good prognosis, right? Mm-hmm and I was grateful to have some help from palliative care about looking at that So there is a they were able to produce for me a chart that showed you know sort of the rate of accurate prognosis versus time in these kinds of injuries and of course the longer you wait the more accurate the prognosis gets and it's pretty dramatic that sort of slope Of how much more accurate it gets with the amount of time But it so you have to decide where on that chart you're willing to stop interventions. Yeah, so that that chart doesn't answer the ethics question But it helps to give some sort of information about appropriate, you know where you'd sort of make that cut off So we're in a difficult position and we You know, I think all agree that like it's too soon right now, but we we don't want to let this go on indefinitely Or even that year that that would be too long for this family So we're we're in this are we gonna say it's okay for them to make right that decision. Yeah So that's kind of movement one and and what we come to with the family is that they're willing to wait at least a couple more weeks and so it buys us some time So the second big ethics question that comes to us is are these family members even appropriate decision makers? and you sort of hinted at this, right? So they are the next of kin, but they don't know the patient. So it's hard for, you know, they're gonna, they're gonna have an uphill battle convincing us that it's appropriate to remove all this stuff soon or rather than later because they don't know the patient very well. - Yeah, that's a challenging wrinkle for sure. So appropriate decision makers, kind of by definition, are people who are able to represent or speak on behalf of the patient, right? So someone who's able to make decisions on behalf of somebody else, but part of that assumption built in there is that they actually know the patient and, you know, we kind of, we often default to next of kin or family members or, you know, close intimate acquaintances or relationships, but sometimes those formal relationships, the legal next of kin, like you said, doesn't often know the patient very well or even better than kind of a random person pulled off to street. - Right, so there's this big question lingering about their appropriateness and, and this keeps coming up interestingly in the case, like this question about organ donation makes many people on the care team suspicious that this family just wants him to die, that they actually want him to die. And then they are inappropriate decision makers, because of this fraught relationship, they don't want to deal with them anymore, it would be better for the entire family that he just die is a concern by the care team or some members of the care team. And of course, that would be alarming, right? If you, you know, had a family member like that, it was making decisions with the purpose of, you know, having the patient die, 'cause it is of some benefit to them, for whatever kind of benefit that is, that's concerning. And so the second question that's coming to us is, you know, should we be allowing them to make decisions? Okay, they're the legal next of kin, but should we be trying a little bit harder to find somebody else? And the family is telling us they don't know about any of his friends, right? Whether he has sort of a romantic partner because they just don't know him well enough to know about that. - Interesting. - So there is really nobody else that we could turn to at this point. - Does the family, does the family seem to work? Do they want to be making these decisions? Was it your sense that they were doing so reluctantly? - So I went to meet with them. So this is, you know, one of those cases in which you probably do want to talk with them. Because if you're getting the question, are they appropriate decision makers? You want to meet with them and sort of get a sense of like, that question, do they even want to be making these decisions? Do they seem to carry malice toward this person? Right, so what are they like? And what is their rationale for kind of making the decisions that they're making? So I do meet with them. They've been at the bedside since they learned about him and his injury. - Okay. - So they seem for that sort of external fact that I hear from other members of the care team. They're there. So they want to be there and they are devastated. They're hurting. You know, and it's helpful that they're expressing that in a way that seems genuine and that they're expressing it appropriately. Like you can imagine that they might be devastated but not expressing that in the right kinds of ways. - Yeah. - Me too interpret, which is a different kind of question. But they seem to genuinely love and care about him. They recognize that they don't know him as well as they could. But that I do sort of sense that they, not that they are glad to make decisions, but that they are willing to make decisions and they're willing to be there in the suffering. So they're there and they're willing to make these decisions. - Yeah. That's helpful because often we see family members who are estranged from the patient who regardless of whether they have malice or hostility towards the patient, just like don't want to be involved whatsoever. And that's their right too, right? They can recuse themselves or step away from that role. So I think it's at least helpful when family members are engaged and do recognize that maybe we don't know all of the things that he won, but he's our son, he's our brother, we wanna be involved. - Right, it both sort of is helpful and makes it more complicated because if they weren't as willing to make decisions, if they were more willing to defer to the care team, then we probably wouldn't have had an ethics case, right? So it wouldn't have created conflict, but at the same time you want them to be involved because we need to know something about him. We need to know that there's people besides us who are making important decisions. We don't want that to all be on the care team. - Right. - So when I'm talking to this family, they're saying, we ask the kind of typical questions, like what did he enjoy, what was he like? And they can only answer these questions both from before he left home and through, they do have some kind of mutual friends that are keeping them abreast of some of his goings on. So they know a little bit about his social life through some mutual context, but it's kind of sketchy. But what they're telling us is, he is a person who enjoyed kind of being out and about. He never wanted to be confined. This is part of the reason he left home. So the idea of being sort of hospitalized, institutionalized, even this talk of rehab after he leaves the hospital, that's all concerning to them. And they say pretty clearly that their worst fear is that they would put him through all of this and he still wouldn't make a meaningful recovery. They're telling us, it'd be amazing if he fully recovered. But our worst fear is that we do all of this to him and he doesn't recover. And that would be the worst case scenario for us because of the kind of person we think he was. Yeah, yeah. That's often a concern when we don't know what the patient would have wanted, right? So we're forcing them to go through all of these really difficult things. And then we don't even know at the end of it, even if we're successful through every step of the way, whether it's something they would have wanted or not. And it may be the case that he pulls through and recovers and is able to speak again and is very displeased about what decisions were made, right? Absolutely. So, and the other thing they're telling us, which is concerning to some, but actually not so much to me, is that if he got to a point where he could leave the hospital but still need a lot of care, they would be unwilling to take him home to do that. Okay, interesting. Wow. Okay. Because he created such chaos in their lives when he did live at home. Okay. And given sort of the way that they understand he's living his life now, they can't imagine home feeling, even if he was pretty debilitated, they would not feel safe with him and their home. Okay. So that puts a wrinkle in this too, because it might, it might very well be the case that he needs to recover somewhere other than a hospital or we have facility. You know, he needs a lot of care, but he's not appropriate for those institutions. And so somebody needs to be taking care of him. And if the family is unwilling to do that, where will he go? Mm-hmm. Yeah, so the burden of continuing his rehab, setting aside the question of whether we think it's appropriate, you know, something he would want to begin with, that burden and that work, not just like the physical work, but like the emotional work would have to be, you know, born by somebody else. So yeah, okay. All right, so how did you address that? Well, so, you know, it was my assessment after spending time with this family that they were appropriate decision makers, that they did not carry a kind of malice toward him, that they knew enough about him to make decisions on his behalf. You know, it wasn't perfect, but it was better than a court appointed guardian, right? So they were appropriate enough and that we should follow their lead when we get to the point where decisions need to be made. And it's looking like when they talk to palliative care, they're becoming more and more convinced that this is not a long term thing they want to continue with. That at some point, if he does not make any sort of meaningful recovery that they will want to discontinue treatment. Gotcha. And how long after you were consulted, is this now, have days past or is it still kind of your first assessment? No, many days have passed. So we're now getting into week two of this case, right? So again, the longer we wait, the more accurate the prognosis is going to be still pretty early in the course of all this. So, you know, we're a couple weeks in, the family's still willing to wait a little bit longer, but not too much longer. Okay. Yeah, at some point, often these situations where somebody's intubated, the really important decision point for family members is often when the ventilator needs to be transitioned from an endotrache also into the throat tube to an in like a tracheostomy, right? So a more permanent ventilator. So are you guys approaching that point yet? Yes. So that will be the decision point is what we need to move to that. And what they're telling us is that they don't think They would. want that. So, you know, if we get into the point where, so if you were an older, sicker patient, you know, a couple weeks would be maybe where we need to make that. The medical care team is saying we could probably wait a couple more weeks until we need to make that decision. So everyone's willing to wait that long. And the reason that the month, okay. And the reason that they're willing to wait is just like you said earlier, to get more information to make a more accurate prognosis. Right. Is there any signs of recovery at all? Right. So far know. And as the week progresses and the attending neurologists switches over, we get a new attending who's like, gosh, the idea that this person with this injury is going to make a full recovery seems pretty impossible. Any meaningful recovery, this new neurologist is much less optimistic about that. So also acknowledges that it's difficult to do a prognosis on a patient this young with this kind of injury, but is less optimistic than the previous neurologist and is more willing to go with the family if what they decide is to remove the vent or extubate and allow him to die. So he's more okay with that. So we get to about that month point and basically everyone is in agreement that extubation is appropriate to allow the patient to die. Okay. So the decision was sorry. So the decision was made that we're not going to transition him to not going to do a tracheostomy and do a permanent ventilator. And so at this point, we're going to withdraw the ventilator with the understanding that he probably will not be able to breathe on his own and then then he will die because of the injuries and his inability to breathe on his own, right? Is that correct? Okay. Yeah. So always suspect is that he won't be able to breathe on his own. Yeah. Yeah. And so sometimes we call that a terminal extubation, right? Or other times, I think the more, I don't know, the softer language is a, oh, what's the term? Extubation without re-intubation or a compassionate extubation are all different phrases that I've heard for that process. But we're freeing him from the machines. That's one that I hear quite a few days. Yeah. They don't ever hear it before. Liberation from the ventilator I've heard as well, right? Yeah. Okay. Yeah. Okay. So we get to this point where okay, that that seems reasonable. We set a date a few days before that happens. So this is movement three act three. Okay. A girlfriend comes to the hospital. The girlfriend didn't know existed. She claims to be a long term girlfriend for about five years. They've been a little off again, on again, but live together. Okay. The family didn't know about her because again, they just don't know much about the patient. And she didn't know he was in the hospital in part because it's not unusual for him to leave for a few weeks at a time and come back, given his drug use and other aspects of his social life. So when she learned about his hospitalization, she came as soon as she heard. She is less convinced that this is a good idea. So she, okay. So she is indicating that maybe continuing life prolonging treatment would be something that he would want. Is that what she's saying? Yeah. Well, she's having a hard time articulating that as something he would want, but it's very clear she doesn't want him to die. And she is, you know, at first it's just sort of a little, I'm a little uncomfortable with this, and that kind of ramps up a bit because I think at first she wants to get along with his family. That's, you know, that seems important. But the more it becomes clear that what they're going to want is extubation, the more she gets adamant that that's not what she would want. And she's not convinced that that is what would be best for him. So she's getting a little bit more agitated about this as it becomes more clear that that's where we're headed. Okay. Is she saying so often in these types of situations there's the question about who should be making decisions, right? So the act two of your case. And that's one kind of set of questions. But the other set of questions is what decisions should be made. And it sounds to me that she's objecting to, or at least raising concerns about what decisions are being made. Is she also making raising concerns about the family being the decision maker? Is she saying that she ought to be making decisions? Well, she's not saying that directly, but she is implying that they don't know him as well as she does. This came up, which I, it was, I think the first time I had sort of understood anything about common law marriage. So not all states have common law marriage, but in states that do, I was surprised to learn that it doesn't require much, but it does require a little bit. Like there is a difference between a long-term girlfriend, boyfriend, partner, and a common law marriage. And at least in the place I was working at the time, the difference was merely that you had to say that you were married. You had to imply that they were your spouse. And if you said that and you had been living together for a certain amount of time like they had, then we actually would have called this person his spouse. If she had just started calling herself his wife, we would have actually allowed her to be the decision maker. Interesting. But she didn't. She didn't. Interesting. So I, from in my practice, when anybody asserts common law marriage, my response is often probably not. So the requirements are so specific, but also changed by state and kind of this general understanding of what common law marriage is is often incorrect. So in the place that you were practicing at that time, so it's just asserting to be the spouse was enough. If they had lived together for a certain amount of time, they had shared sort of a household meeting like bills and you know, they lived together, they share some finances and they called themselves married. That would have been enough. Okay. But she didn't do that. So she doesn't kind of become a next of kin for for lack of better term because of the common law marriage. Right. So you know, she might object and we want to keep her involved in conversations because the family is okay with that. But at the end of the day, his grandmother and sister are the decision makers and they're in harmony with what they want. So this is a wrinkle, but it's not going to throw everything off the rails just because of her status. So it comes to the day, we're going to extibate about an hour before extibation. She comes to the hospital with an MPOA form. Okay. Tell us how to power. Okay. A medical power of attorney. I think where I was practicing it was a healthcare power of attorney, a power of attorney for healthcare. It gets called different things in different states. But this is the legal document where the patient has designated this person to make their medical decisions. Okay. Interesting. Convenient, right? Like why hadn't she mentioned before that she was the power of attorney for healthcare. And when we sort of so we're a little like wow, that we didn't know this. She says, you know, this is of course not the first time he's been hospitalized because of his drug use. We've had to take him to the hospital before. And the last time we took him, which was a couple years ago, they told us that this is a document we should probably have because, you know, he will need a decision maker. And so together we filled out this document. And so at the end of the day, I'm the decision maker and I don't want to extibate. Wow. Okay. So everything that she was saying makes sense, right? Except for the fact that he's been in the hospital for an extended period of time. And we are just now hearing about this range. Yes. Right. So we say, okay, can we see it? Can we see the document? And she gives us the document. And it's suspicious. Okay. It's suspicious because every signature is exactly the same. Every initial is exactly the same as if it were done like on a PDF reader. So like it's an electronic, it looks like an electronic signature. You know, it's printed out. So it's hard to say that definitively. And it's back to, well, it's suspected that it's backdated. So we are suspicious that she just doctored this document. Okay. Wow. And then yeah, what do you do with that? Right. That doesn't happen often, but it does happen sometimes, right? So before we get into kind of how to deal with that, why do you think that she would go through the hassle of this? What's her motivation? I don't think she wanted him to die. Okay. I mean, my best sort of most compassionate read on this is she didn't want him to die and she knew she didn't have the authority to make that call. And so and she wanted it. She wanted the power to make that decision. And so this was she learned that this this was the way. If we assume that the documents fake, if we assume that it's real, why she would wait so long to produce it is a different question. Right. Yeah. Interesting. Okay. So you are presented with this document. document that you have concerns about? There's concerns, right? So you can't, we call off the extubation. You can't deal with this document in an hour, right? So at least that's the sort of, and I don't know that I was part of that decision. We had switched off this, because it's had gone on for so long, we had switched on and off with this case with other ethicists. Okay. So I'm part of some of these discussions. I'm not part of all of them, but this comes to me like you will not believe which has happened. We had gone through all of this and then this just happened. Okay. But this is the first I'd ever heard of this. I've never even thought about somebody, you know, forging a document like this. Okay. And I don't know what to do. So you can't, I don't, but my clear judgment was you can't do anything right now. So we have to call off the extubation. We can't figure this out in an hour. So you know, let's all look at the document. Let's like look at the witnesses. So it is witnessed by two people. The social worker just kind of does a Google search and these are real people who live at the real addresses that they claim to live at. There's no phone number so we can't call them. But at least, you know, that kind of checks out. But I think there's this big question like what do you, what do you do? You know, do you presume that the document's real? Because it's not our job to verify that it is or isn't right? And that's true, right? So I don't think it is our job to sort of decide whether this is a real document or not. Do we go to court with this? That would be a pretty extreme thing to do. But do we have to do that? So I think we're in this real bite. I mean, the resolution we came to I think is interesting, but I'd be curious. What do you think you would do, Tyler? So I've seen this before. Not a lot, like I said, but every once in a while we'll get documents that are, I wouldn't say suspicious, but there are concerns about them, whether it's, you know, the signatures being suspiciously similar or there's parts that aren't completed kind of appropriately or, or there's some sort of other conflicting things. I, the advice that I give and again, I agree with you that this is not our job to do this interpretation or investigation of the validity of this is that if we have concerns about whether it's valid or not, those concerns have to be addressed. Like you said, we can't, it would be, I think unwise to go forward with particularly an intervention or the withdrawal of an intervention that has irreversible consequences until we figure out what the validity of this document would be. But I don't see a lot of other options besides going to court. Being somebody whose job it is to decide what facts are to look at it. I mean, to, was risk management or your legal department involved at this point? Yeah, yeah. And they're also like a little perplexed. And they do agree that that could be a route to go. I mean, sort of the real downside of that is that this patient then lingers in this state because we know that this is going to take a long time. And potentially months to go down that route. And given what we've already decided, that's putting a real burden on the family and the patient to go that route. If that's the only route there is, then everyone's willing to do it. But nobody feels great about that. Right, right. So was the girlfriend significant other? Was she saying again, so trying to put words, trying to figure out kind of what the motivation was? Did she think that him going to a long term rehab situation was, was I, what she was advocating for? I mean, was that what she hoped to accomplish? You know, I don't know that we even got there yet because she had not been, she had been in a lot of family conversations, but she had not been the lead in those conversations before sort of this moment. And so we didn't get her input on those kinds of questions. Okay. Before this. So really it's just that she in this moment is saying, please don't extubate him. Leave him on the machines. So we haven't even gotten there yet because we didn't think of her as the main decision-maker and she hadn't voiced those concerns in previous meetings. Interesting. It's also interesting and probably makes it more complicated that she's voicing the concerns that other healthcare providers have voiced in the past. Right. Right. And she had been the initial person that we contacted or had come to the hospital. Probably this would have won the day. Right. Because it was more concordant with what the initial neurologist was saying. Yeah. All right. So what did you guys do? Okay. So I didn't do this, but I heard about it later. Okay. A really sort of bold tech by one of the physicians who went into, so they had a family meeting during the time that the extubation was supposed to happen. And the neurologist had the document in his hand and he said, thank you for bringing this to us. There has been some concerns about this document by legal and ethics and we're going to need to bring it to their attention and get their input before we do anything. Okay. And the goal there was to freak her out to sort of test, to test whether or not she would stand by the document if the concerns were voiced out loud. Right. Okay. And she immediately relented and said, I withdraw decision making authority. I think that the rest of the family should make the decision. Interesting. So pushing back on whether it's at least just raising the concerns verbally, she completely backed off of that then. Huh. Interesting. Which of course led people to think that it was a forged document and that then she worried about getting caught doing that. Yeah. But it could also be the case that, you know, that's one way to interpret her actions. But another one might be to, that maybe it was a valid document and she just saw that it was going to be way more difficult to assert her role as a decision maker and she just relented. Yeah, it could be. Right. So we'll never know for sure. But it was, it was an interesting. I don't know that I, it wasn't like what I advised to do because I wasn't part of the conversation. It wasn't interesting outcome of that and I don't know that it was the wrong thing to do. It maybe, like you said, you should question it and maybe saying it out loud. I mean, that could have actually really ruined the relationship with her if she had pushed hard back. But it kind of just resolved the situation, just the insinuation that this was something we needed to look more into kind of caused her to back off. Yeah, you kind of called, called her, not her bluff, but called her on it. And yeah, I don't know that that would be my recommendation either. But I, I think not because I don't think it's an appropriate and okay thing to do an okay approach. It's just like you said, it's bold and I see that. I don't know. I think that there's a lot of potential downside to taking that approach. You know, generally when people, you call people on their bluff or on their maybe in untruthfulness, often they don't back down, often they double down, right? So that would be my concern is that she, that this would escalate the situation. It very well could have. I also, you know, I don't know. Again, I'll never know if this was real or what her motivations were, but if it was fake, she could have gotten in a lot of trouble, right? If this had gone before a judge and it was shown to like, you know, if you could find that PDF on her computer and it was dated, you know, the day that she brought it in, right? That's forging a document could carry some consequences. Yeah. Yeah. Yeah. Yeah. Yeah. So interesting. Wow. Okay. So did, and you said it was one of the healthcare team who took that tact during the family meeting. Yep. Wow. Did you, did, was that a premeditated like, this is our plan. We're going to go in and kind of push, push back on this or do you think it was more of a, I think it was that person's plan, but I don't know that that plan was like shared with everybody. Interesting. Yeah. Okay. So, so then what happened? So then they excavated and he died. Died peacefully from his injuries. Yeah. Did she come? Was she, the girlfriend, was she around? Did she come back to the hospital? Did she play scarce after that? I think they were all there for the excavation. Okay. Yeah. So an interesting case, because it raises for me a couple of questions. So the first like immediate one was, because I had never seen this before. Oh my gosh. Are people faking these documents all the time? And we just don't know because it, it's not coming to a head in this like really dramatic way. Right. And I've never thought about that. It would be so easy. I hate to say that in a recording where anyone can listen to it, but it's, it wouldn't be hard. Right. To, to fake a document like this. Yeah. And I wonder if it's happening more than I think. Interesting. Uh, yeah. I want to hope that it's not. Yeah. Because the percentage of folks in the, in society and our communities that have these advanced directives completed is like what 15% maybe 20% depending on how you're defining the community. So if any percentage of those are illegitimate or inaccurate or forged, I mean that's concerning. It's concerning. It also then made me think back to all the times I've forged my own parents signature, which was never of course, but you know, as a teenager. Have I ever done that? Maybe. So that was the first question. Like, how would we ever know what an interesting question that I can't, I almost have to put out of my mind because I can't be suspicious of all of these documents. Like it would, it would derail what we're trying to do. The good things we're trying to do to always be suspicious. The second question that came up in the course of this case, but still lingers for me is who gets believed in the hospital? Like when people come in, who do we believe? We seem to believe we didn't initially, but we came to believe this grandmother and this sister and what they were telling us and we were even more suspicious of this girlfriend. So why was that? Like was it because of the decisions they were making? Was it because of the way they were presenting themselves, the way that we interpreted kind of how they looked or how they presented themselves, the kind of story that they told. You know, I think that there's a lot of bias that can enter in here. Yeah, absolutely. We're suspicious of. Yeah, absolutely. And the, I think one thing that I have thought about. Maybe more, more frequently, more recently is that the way that we. Including patients and families present ourselves, like you said, there's so much of that that goes into the decision making and like that that relationship with the family. So we often see this with situations where people have chronic pain. And as a, as a layperson or even as a healthcare professional, when somebody says that they are in 10 out of 10 pain, we expect them to be acting and almost performing in a certain way that. And then we get a line with that description of being in pain. And when there's discord or there's a. Disagreement between the way that somebody is acting and what they're reporting or what they're describing. We immediately think that they're lying or they're fabricating or they're embellishing. So. Right. And, and we know, of course, you and I know that people can be a 10 out of 10 pain and just look pretty placid because they're so used to it or that people just express pain differently. I mean, in this case, I was being asked actually pretty specifically to like when it when the question was, are they the appropriate decision makers? I felt like it was my job to like, sauce out whether they loved this patient, whether they really cared about it. Right. And that's a, that's a tough thing to assess. I'm not a psychologist. They, but part of my, my report was they seem sufficiently invested and their narrative about his life seems sufficiently informed. And that's a, you know, you just have to at some point as a clinical, this is make those kinds of judgments. I'm not sure that we're trained well to make those kinds of judgments. Oh, I, I am. And the answers were not. We're not trained. Yeah. Yeah. Yeah. I can, I can answer that question almost without without question is that no part of my training, except for my experience, like kind of on the job has prepared me or prepares anybody who goes through kind of graduate level training to be a clinical ethicist to make those types of assessment because at the end of the day, they're almost unknowable. It's like trying to define somebody's intentions. And then, you know, being, you know, having a philosophy background like you do, I'm sure that you're completely like going into the weeds about, you know, what is love, what is relationship, like all of these bigger kind of meta ethics questions about what, what these relationships and tail. Yeah. So that lingers for me. And I don't know that I've ever had anyone address that in a way that I felt like, yeah, that's a good way to think about it. And then the last question I, I continue to think about is similar is how much emphasis we as clinical ethicists place on narrative and how insufficient that is to actual people's experiences of relationship. By which I mean, you know, this family needed to tell me a good enough story. And I actually, I find myself saying this a lot. So if a family needs is trying to convince me that the person wouldn't want this life saving treatment, they need to tell me a good enough story about this patient that would convince me that that's the appropriate decision. Right, they need to tell me something about his life and what he enjoyed and what he wouldn't have wanted that informs enough about the decision where I feel sort of satisfied that they're making good decision on his behalf. So it's a kind of narrative they need to tell me, but not everyone is a good storyteller. Yeah. Yeah, you know, in the ways that we need them to be. And so what if they're totally right about what this person would want, but they can't narrate it in a way that's convincing to me or the rest of the medical staff. What do I do with that? What do I do with people who just are, you know, narrate in a way that's less easy for me to understand. That brings up a lot of issues about not, not just am I able to tell a good story because that is a, that can be really hard. I mean, people are sometimes very good and very not good at telling stories, but also that brings into consideration a lot of cultural things about how stories are told and how stories are interpreted, but also, I mean, what if the decision maker has a intellectual or learning or communication disability. Then we are forcing them to do something or perform something or tell us a story that's outside of their ability to do so, but that doesn't mean that they can't they shouldn't be the person to speak on behalf of this patient. That's complicated. So complicated and I have not found a lot in the literature about this question and maybe because it's too big of a question, but I do think for all the reasons you're saying, like sort of people's ability to communicate that cultural differences between the ways in which stories are narrated and interpreted, you know, what kind of gets highlighted in a story, what gets down played. It's almost like I want to teach patients and families how to narrate things to medical teams. And in fact, I have advised like friends and family members who want to stress something who, you know, are having tension with a medical team, like you need to say it in this way. I'm sure you've done this too. The doctors are going to hear it if you say it like this because that's what they understand. That's a real place of privilege to have somebody tell you how to narrate something so that the medical team can hear it. Yeah, yeah, I definitely have done that, especially with family members. I have said, here's what the doctor is going to say or hear something like this. And this is what it means. And this is how you respond to it or this is how you can describe what you. Yeah, but that is a really like you said, a privileged position or privileged way to interact with health care. So that's really interesting. I wonder if we could improve the care by helping people tell stories about their loved ones or about themselves. Yeah, I suspect we could, but that's my case. Oh, lovely. What an interesting case. We, yeah, good. So how does this case stuck with you? Like what? Has it changed the way that you approach other cases or think about clinical ethics? I mean, I think in those ways that I was just describing is, you know, I, it's more like I have these lingering questions that haven't been answered that stick in the back of my mind, but I don't know how to translate them into different patient care. So if any one out there has ways in which they think about this that are translatable into practice, I'd love to hear it because I think they just sort of linger with me and I, and that's kind of why I bring this up is, I don't know how this should change my practice, even though I suspect it ought to. [Music] Thanks for listening to this episode of Bioethics for the People. For more information about the podcasts and your wonderful hosts, please visit us at BioethicsForThePeople.com. And special thanks to Darian Goldenstahl for all the podcast related artwork, Christopher Wright for Composing and Recording all the music you've heard here, and Cameron Swazie for Audio Engineering Support. [Music]