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Welcome to SNI Digital Innovations in Learning in association with UCLA Neurosurgery. Linda Liao, chairwoman and its faculty are pleased to bring you the UCLA Department of Neurosurgery 101
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lecture series on neurosurgery and clinical and basic neuroscience.
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This series of lectures are provided free to bring the advances in clinical and basic neuroscience to physicians and patients everywhere. One out of every five people in the world suffer from a
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neurologically related disease. The lecture and discussion is on ethics. The title is decision-making for the incapable patient.
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The lecture is Neil Wagner, Chair, Ronald Reagan, UCLA Ethics Committee.
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Thanks so much. So I'm Neil Winger, I'm a general internist here. So it's great for general insurance to get to talk to surgeons. It's a real honor. My hope this morning is to talk about a case
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that turned out to be pretty controversial, but to do that in the context of talking a bit about how we make decisions for patients who have become incapable. I'm sure for many of you, this will be
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review. What my goal is to make sure that absolutely every clinician in
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our health system has a really firm grasp on how we make decisions for incapable patients.
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If we can do this really, really well, I think that maybe the case that I'm gonna present might have gotten slightly differently.
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May encourage conversation. So please don't hesitate to either ask questions or interrupt or yell out
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the more conversation and probably the more learning. So I'm gonna talk a little bit about the goals of dance care planning, specifically about the role of pulse, and to talk about this case,
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which was difficult. So to set the stage,
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this is a real case, but it's not atypical among the cases that we see. A 70-year-old gentleman, this is not the difficult case. A 70-year-old gentleman who had atrial fibrillation presented with
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a large stroke He was admitted to our neuro ICU. And originally, the thought was that prognosis was not going to be very good. But he actually did much better than expected in part because I
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believe that we provide world-class treatment in that ICU. And if you're gonna do well, if you have any chance of doing well, you will. And he recovered after a long hospital stay and about six
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weeks in the nursing home to return home and actually to participate in all of his usual activities, he went back to work. Over the next year, he had numerous visits with his primary care doc,
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several with his cardiologist and his SARS neurologist once. During that entire time, no one ever raised any issues about what his goals for treatment might be that incomplete and advanced directive
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with him. About a year later, as might be predicted, He had another stroke. This one was massive. And he ended up back in the neuro ICU and the critical care docs there told the family that the
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outcome is not going to be good. They don't think he'll survive. And if he does survive, he'll be completely dependent. And they wanted to know how they should pursue care. They actually
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recommended a comfort oriented plan of care And the family completely melted. They said, we have no idea what dad would want, what grandpa would want. And they began bickering among themselves.
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In the end, they ended up stop showing up in the ICU, did not participate in decision making. And this guy ended up dying of sepsis in the neuro
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ICU. The reason I know about this case is that someone in the family subsequently complained patient experience, that why is it during that entire year that our dad was getting medical care at UCLA,
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no one clarified which his goals would have been for that so that we didn't need to tear each other apart. That was rather insightful on the part of the family, I thought, and really an indictment
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of the primary care doctors seeing him, and something that we really could do much better This is all about advanced care planning because when you guys need to make clinical decisions, you turn to
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the patient to find out what their goals are, and then you fashion a clinical course of care best able to match those goals. What we shoot for is to know what the patient's goals and preferences are.
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When we lose the ability to know what the patient wants, we attempt to use substituted judgment Many people think that substituted judgment means that we find someone to provide a judgment but that
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really isn't what substitute judgment is all about. Substitute judgment is someone who can tell us what this patient probably would have chosen under these circumstances. What do we know about this
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person's goals and values? What decisions did they make previously in their life? How can
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we bring to bear their character, their substance to this decision now? And if we can't do that and the family can't do that, then we make a best interest judgment, which is the worst kind of
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judgment because it very often misses what this individual patient might have wanted. And this is the whole reason that we attempt to find out who the patient wants to make decisions for themselves
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beforehand. And if that is documented in an advanced directive in California that's called the healthcare agent, So that is who we're shooting for. Now, there are unusual circumstances when
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there's someone else designated to make the decisions. It could be a conservator. It could be the office, the public guardian. But for most of our patients, we want to know who the healthcare
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agent would be. That's an officially designated individual. If that person doesn't exist, we don't know who it is. We turn to family members. Why? Because patients want their family in most
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cases to be 19 decisions for them. And in fact, here at UCLA, we have a way of indicating who a patient told us they want to make decisions for them. And that's called an artermonology the
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designated surrogate. Now, why is that different than healthcare agent? Because it's not a legal designation. It's what the patient tells me and I write down in the chart. But when some long lost
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time, family member shows up and says, hey, I get to make decisions because I'm related to this patient. Not the person that you wrote down in the chart. They're probably going to win out. So
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that's why it's important that we that we complete official advanced directives, skip this. So this process that we go through is called advanced care planning. And it's something that most of you
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do on a regular basis, you don't necessarily think of it this way But it's this process about a doctor and a patient and family discussing the clinical circumstances, the prognosis, what the plans
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for care would be. And to also identify who this person would want to make decisions for themselves. And it's designed to achieve an outcome that's best suited to the patient and the family and also
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acceptable to medical care standards so that we don't have families asking us. to provide treatments that are not going to benefit a patient, and more importantly, that are not going to achieve a
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patient's goals. And I wanna distinguish advanced care planning, this conversation we have about future decisions from the decisions made at the bedside. That's really care planning or acute
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decision-making. It is hopefully guided by advanced care planning, but it's not a process that is really done in advance. And because of that advanced care planning is not so easy to do under all
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circumstances. Because people will say, well, how do I know what circumstance this patient is going to be in in the future? How do I guide a discussion like that? It's a different sort of a
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conversation.
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But the reason that it's so important is that if we know patients' wishes, We virtually always follow them. So this is an old study that was done where they randomized patients discharged from
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hospitals into nursing homes, to in the nursing home, having advanced care planning done by a social worker versus usual care, which meant that there was no advanced care planning. And they then
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followed these patients out for a couple of years to find out what kinds of treatments they received And what you see is the intervention was successful, the gray bars are higher than the blue bars,
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at least for when wishes are known and followed. But what I wanna point out is that when wishes are known, they're virtually always followed. Almost never do we know patients wishes and then not
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follow them. The big difference between patients where advanced care planning has occurred and those word hasn't occurred, is that when it hasn't occurred, we usually don't know patients' wishes.
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and we're guessing at the kinds of treatments that we wanna be providing.
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So it's a process, it means having a conversation, discussing what what patients are hoping that medical care will achieve for them. And many of the conversations I have are actually what patients
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want to avoid medical care, getting them into and to specify what they want And the purpose of completing the advanced directive is just to sort of make it official and to decrease friction when
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decisions need to be made and the patient can't make them for themselves So this actually fits into a model that we sort of have for UCLA Health overall, where advanced care planning should be a
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natural part of patient engagement that it should be introduced at appropriate times with appropriate content with sort of a staged approach where there are triggers So what are the appropriate times.
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Well, it seems to me that if someone is going to be embarking on a plan of care. that has dangers associated with it, or if they have a new diagnosis,
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or their prognosis is changing, right? You got a new CT scan, the pet is worse. Those ought to be the times that trigger us to make sure that we're having a conversation about what patient's goals
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are. It should focus on future healthcare goals, not on treatments until it's time for you to link the treatments to the goals based on prognosis. And it really needs to be documented. Today's
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case is gonna hinge on that. So I'm
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gonna present one other little tiny randomized trial. This is a very old trial done 20 years ago or so, published in 2005,
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in Wisconsin, where they randomized patients, you know it's a long time ago because they admitted these patients the night before. cardiac surgery. One's the last time everyone got to, anyone got
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to admit someone the night before. And during that night before, they randomized the patients to how to advance care planning conversation versus usual care, which meant that they filled out the
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consent form so they knew that there was a possibility that they were going to die. But there was no thought about what, how does my willingness to tolerate future health states affect what will
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happen in the surgery where they're going to put me on a bypass pump. And at that time, there was no ECMO, so you may not get off the pump or you might throw an embolus on the pump. And under
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those circumstances, what decisions do I want my family to be making? And what they found is that knowledge was similar between the two groups, there was only about 30 patients in each group.
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Congruence was a slightly better in the advanced care planning group, decisional conflict. between family and patient, slightly less, but the important point is on the last line. Anxiety, the
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night before surgery, before going on cardiopulmonary bypass, was not worse if you did advanced care planning. And it was this tiny little study that allowed, that got us to get the CT surgeons to
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allow us to do advanced care planning with every one of their patients that are coming in for heart transplant or to be put on a vat. And we currently do that. About 80 of the patients are able to
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have this conversation in earnest and another 20 just can't go there. What Cody Leato, the social worker who does this every day on the seventh floor. So we use the UCLA
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Advanced Directive. Why do UCLA Advanced Directive? Because it doesn't contain anything about treatments You can write that stuff in. But what do you think it doesn't have any checkboxes for
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resuscitation or for dialysis or for ventilators? The reason is that our underlying theory is that we need to know, the clinician needs to know what patient's goals are. And the clinician is able
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to take the patient's goals, what they hope medical care will achieve, put it together with what the prognosis is, what the clinical circumstances are, and make recommendations based on that to
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the patient.
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That's the way that advanced care planning best provides a plan of care that is going to maximize patient's goals. Now, you might say, Gee, that's not my experiencewith how patients interact with
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me Patients come to me and know what they want. and almost demand it. You know, that's a problematic interaction style to always achieve what is going to be clinically appropriate for a patient.
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You can indeed write into our advanced directive, I wouldn't want to be resuscitated, or I would want resuscitation under all possible circumstances. But frankly, if a patient wrote that in
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advanced directive and I went over it with them, I would probe what it is that they're hoping for. Most patients who tell me that they don't want to be resuscitated by the time we're done talking,
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they changed their mind. They're willing to be resuscitated. What they were really trying to tell me is I don't want to end up in a bad health state. And that's what this advanced directive is all
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about
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That's the way that our goals, our goal conversations
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move. Now, if you're a resident and you're admitting someone at two o'clock in the morning and you think they're really tenuous and you need to know, am I going to have to move this person to the
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ICU or perhaps even resuscitate them this evening, you have no choice but to ask the question about resuscitation. Unless that's already been done for you and you can look in the chart and then
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review with them decisions that have already been made. But I would say under most other circumstances, we shouldn't be asking about resuscitation. We should be asking about goals. And based on
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the goals and based on the prognosis, we should be able to make recommendations about resuscitation.
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And this information gets put into the Care Connect in the Advanced Care Planning Activity. And if you've never been in the Advanced Care Planning Activity, I encourage you. Those of you with
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computers, go to it now. You can wrench it in. Or you click where it says Advanced Direct Over on the Storyboard, just under code. If you click on that, this opens up And what it has in it is
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who the surrogates are who are making decisions for the patient. You get to put that in based on your interaction with the patient. And all the advanced directives or pulse forms that have been put
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in the system and any goals of care notes that have been written. And also if the patient has lost capacity, you can indicate that in this area The whole purpose of this is for everyone. who's
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taking care of this patient to be on the same page and see what conversations have occurred in the past. And please. Does this have legal standing in comparison to an advanced directive that's
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immunized? So the question is, if you write down that someone has a surrogate, would it have a legal standing comparable to an advanced directive? So that's actually the perfect question for this
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slide You can indicate that a particular individual in the healthcare agent and emergency contacts area, that's at the top, is a healthcare agent, a first or second alternate in the advanced
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directives, or a surrogate designated by the patient. And that surrogate designated by the patient is who the patient says they would want to make decisions for them.
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they never haven't completed an advanced directive yet. That's why it says no advanced directive. And the answer is it does not have the same legal weight. It won't. So when I'm in clinic and I
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hand a patient an advanced directive and I explain to him why it's important that he go through it and fill it out and to bring it back next time and we'll talk about it together.
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I also asked the patient who would you want to make decisions for you? Or narrowly, it's obvious. It's my wife, it's my oldest kid, it's my husband. But every once in a while, someone will tell
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me, oh, it's Mike, my friend at work. So that's interesting, your friend at work, but you're married and you have six children. Yeah, that's why, right? I'm actually, I'm about to move out
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and I hate my kids and I'm really friends with Mike and he should be making decisions for me So I'll put down, Mike. as the designated surrogate and I tell them I promise you if you don't bring back
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this advanced directive witness to notarized Mike's not making choices for you. Your family is going to show up and say we're making decisions.
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The default surrogate the other choice on here you guys decide. So this is a case where the patient never specified who they want to make decisions they never completed an advanced directive. We
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don't have anything written in the chart about it and now they've permanently lost decision-making capacity and decisions need to be made and the doctors need to sort out who gets to make decisions
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for this patient. It may be obvious there may be only one relative or it may be really unclear
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and but you can't have a group making decisions. There has to be a decision maker and so that gets decided and we put them in as the default server goes.
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And then we write a goals of care note. The whole way that we know what conversation you had with your patient is the documentation that you put in the chart. And if you hide it in a progress note
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somewhere, no one's ever gonna see it. So you copy that part of the progress note and you paste it into a goals of care note. And everyone will see your goals of care note.
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Okay, so this is a different case A 78-year-old woman after extensive radiation oncology treatment for meningioma has had a steady decline over time. And she's admitted for drainage of a subdural
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related to a fall. She has recurrent falls. She's unable to care for herself at home and has severe chronic pain. While she's in the hospital post-operatively, you
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get her son and her together and you have a conversation. And together they decide the patient She doesn't want to be rehospitalized again if possible. She certainly doesn't want CPR or to be in the
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ICU. She's going to go to to rehab afterward. What advanced care planning document would you use for her?
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This is the part where you guys participate. A pulse, exactly, right? So you're going to use a pulse. Why a pulse? Because a pulse is for a patient who wants less than fully aggressive medical
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care.
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That's the purpose of the pulse. Pulse stands for physician orders for life sustaining treatment. It is signed by the patient, if they're able, or the appropriate surrogate, if they're not And by
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the doctor, it also can be signed by an NP or a PA.
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And there's three parts to a pulse. Do you want to be resuscitated? Yes or no? Do you want full treatment, selective treatment, and comfort-focused treatment? And selective treatment is going to
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be important in the case I'm going to read it. The goal of treating medical conditions while avoiding burdensome measures In addition to treatment described in comfort-focused treatment, Use medical
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treatment, IV antibiotics, and IV fluids as indicated. Do not intubate. May use noninvasive positive airway pressure, generally avoid intensive care. And you can even check the
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box saying don't hospitalize me, unless that's the only way to keep me comfortable. Or you can choose comfort care, which is care fully focused on quality of life and comfort without a goal of
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longevity You can also indicate whether you want to have a feeling to a trial or not even ever tried. The purpose of this document is a doctor's order. It's an actual order. So when this document
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gets carried from the hospital into the nursing home, it's a doctor's order in the nursing home. If they go home with it, it's a doctor's order for the EMT that show up at their house when someone
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calls 911 It gets followed everywhere.
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Yes. Two questions. Where it stays legally recognized decision maker, does that include surrogates that are identified via like a presumed surrogate process and not named by the patient are purely
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those named by the patient and legally recognized like by a notary. No, it's the first one. Because otherwise we would have no one to sign the polls. Right. Because only 25 of people have
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advanced directives. And we haven't asked everyone who they want So it's very, it's most frequently someone that is not legally identified. And then my other question is when selective treatment is
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selected for these patients? Where does like operative intervention fall within that when a patient has decided upon selective treatment? Does that typically mean that we favor not pursuing
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operative intervention? I know obviously it says do not intubate, but a different situation where you're intubating. So that is a wonderful question. Um, that, that really is why when you
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complete a pulse, you complete, you write the goals of care note so that I can understand when you completed the pulse, what was this patient aiming at. So I could, uh, I could pick selective
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intervention for a patient who tells me, listen, I've lived a good life I'm really not willing to be poked and prodded and have things done to me to keep me going longer. I've really gone as long
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as I want to go. On the other hand, I'm okay with my life. If I get pneumonia, give me antibiotics if I'm going to be able to stay the way that I am But I really don't want things that are going
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to be really bothersome to me, or that would leave me in a state worse than I currently am My patient tells me that I would pick selective treatment and I'd write that in my goals of
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On the other hand, you could have someone who says, I
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keep on getting hospitalized. I don't want to keep on getting hospitalized. I don't want to end up back in the ICU again. On the other hand, I want to be as functional as I possibly could be. And
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if something quick happened to me and you can get me back to the way that I am, that's acceptable to me. I can write that down in my goals of care You know, that also probably would be selective
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treatment.
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So selective treatment is a very broad category, which is what God is into trouble in the case that I'm about to present. Yeah.
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We've already done case. So as a comment made, we reverse pulse all the time that I'm not legally binding.
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It's hard to understand. This is an order So it's not binding, it's not, what is that term? we reverse pulse all the time. So I'm about to get to them. I'll give you a card. Okay, thanks.
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That's actually a great prelude. So
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do I even need to, do we talk about all this stuff? We did. When patients have had DNR orders in the hospital and they're getting discharged from the hospital, they should have a pulse because
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that do not resuscitate and then follow with them Unless it changed or you got them better and now resuscitation does serve their purposes. Where patients are allowed to change their mind, we need
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to be reflective of that.
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What does pulse do anything? Just these are brand new data that my colleague Dave Zangman just published a couple of weeks ago that shows that among nursing home patients, what you have written on
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your pulse directly translates. into the number of hospitalizations you have, the number of the days you spend in the hospital and the days you spend in the ICO. And the most interesting point is
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just this one line here, where if you have a pulse, it says, if you have a pulse that says you want everything done, you're no different than not having a pulse.
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Which sort
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of makes sense if you don't complete a pulse for people who want fully aggressive treatment. But it makes me wonder for all these people that don't have a pulse, is that in part because no one's
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really asked about what they want. But decisions get reflected in a pulse, directly get reflected in the utilization that nursing home patients receive. As one would hope.
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There's something called an ambulatory DNR order. I've seen a number of neurosurgery patients, so some of you know about this already, that if a patient doesn't want to be resuscitated and you
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write a goal of care note and you complete a post indicating that, you can then write an ambulatory DNR order. And that DNR order doesn't only have an effect in the hospital, it actually counts
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throughout the entire UCLA health system. So when they walk into a clinic or they go in for an infusion or other kinds of procedures, everybody knows this is someone that we wouldn't resuscitate
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should they have cardiovascular collapse. Actually, if their heart stops, we wouldn't resuscitate if their heart stops. And we've had a couple of cases recently, one in the Boyer and one just a
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couple months ago down in Redonk where this wasn't known and we inappropriately resuscitated people It's a hard way to see the importance of this system, what you are saying.
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only for your own test. It's just for UCLA Health. Yeah. And you can see it on the storyboard, whereas for code, it either says not on file or prior. If you complete an ambulatory DNR or it says
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ambulatory DNR. So it's very easy to see by just looking at Care Connect that this person isn't supposed to be resuscitated.
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So just when Dr. Bergschneider has to leave, I'm going to present the case.
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Okay, so this is a little bit of a complicated case. Some of you may already know about
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it. In this case, a 58-year-old gentleman with multiple medical problems, including chronic eosinophilic salivatiditis, having had his some
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undibular glands excised, deafness with a left cochlear implant that actually wasn't working very well, papillary thyroid cancer, prostate cancer after XRT.
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chronic sinusitis, chronic pain, was admitted to Santa Monica Hospital on July 15th with cough, achycardia, and evidence of pneumonia. And the hospitalist who saw him in the emergency room
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recognized that communicating with him was very difficult. And I can testify to that, 'cause he was seen by the residents of our clinic, and I saw him three or four times, and every time it was a
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half hour of communication He didn't hear very well. He spoke farcey better than English, and it was a struggle. Despite that, and the patient had never completed an advanced directive, the
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hospitalists worked really hard to understand his goals, and they ended up writing a DNR order, actually in the ER as he was being admitted, because that's what he told the hospitalists that that
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he would want. He would not want to be resuscitated. A pulse was completed on the following day, indicating DNR and selective treatment. And on the 17th, the NP, who completed the pulse with the
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patient, working on the hospitalist service, wrote, completed pulse per patient request. All topics discussed in patient made his wishes very clear. No CPR, no intubation, no artificial
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nutrition Patient was coherent and linear in his thinking. He did not appear anxious or under any duress. He was OK with continuing medical treatment.
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This is what the NP wrote. There was no goals of care note reflecting that conversation at all.
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And this is actually the pulse that he completed. It says, do not temper resuscitation selective treatment with all of the lack of clarity that we just discussed, and no artificial means of
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nutrition. And the patient himself signed it, and there was no event directed, so this is his post. So on the
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22nd, seven day a week after his admission, he's unarousable and found to have a cerebellar bleed. And the family pushed the covering hospitalist who met him when he became unconscious for the
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first time to reverse the DNR order, and this is what the hospital, the hospitalist wrote. It's a little bit long, and I only included the part that was really relevant, but I think it's worth
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reading through. This morning in my evaluation, the patient was noted to be untunded, which is an acute change from prior. Code stroke called CT head noted for large intraceural hemorrhage with
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massive fat neurosurgery and I see you consulted, recommending intubation, reversal of Lovanox and aspirin. and platelets and red-lanked it to Ronald Reagan for neurosurgical intervention. Of note,
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the patient on this admission is DNRDNR. On admission to Ronald Reagan February of '23, the patient was full code. A post was filled out on July 16th, noting DNR and DNI on this admission. And on
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admission, HMP, patient was DNRDNR. I've had an extensive discussion with the sister and nephew The sister and nephew today questioned the patient's capacity to make that decision on July 16th,
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given his acute illness. I have made clear to the family that as a provider, we have a duty to honor patients' wishes based on advanced directives and goals of care discussions. I have discussed
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with the neurosurgical team and the ICU team, and we all agree that a reversal of code status to full code is reasonable. I have discussed with the family that the decision to reverse code status.
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may result in significant morbidity, such as a prolonged hospitalization, severe pain, disability, that at this point is unclear whether it would be reversible. The family is aware of these risks,
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but given that without aggressive intervention, including intubation and neurosurgery, the patient would likely die in hours to days. Thus, we will proceed with transfer to ICU for intubation
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prior to transfer to Ronald Reagan or ICU
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Comments, questions, thoughts.
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So, the DNR order was reversed, the patient was intubated, moved to the ICU in Santa Monica, and later that evening, later in the day transferred to Ronald Reagan. An ethics consult was called
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from the OR by anesthesia when the patient arrived in the OR over here, and they were wondering why surgery was planned in light of the pulse So we had a family meeting on Saturday night, the 22nd
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of July, neurosurgery and ethics with a room full of family. I think it was on the
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668. And we looked at the pulse together. We discussed what was known about the patient's wishes, which actually was very little, except one of the family members was aware that the patient had
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decided he didn't want to be resuscitated and actually had completed the pulse. And the conclusion of the meeting was that the patient should not have been intubated and that surgery should not be
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done. This was further complicated by the fact that this is an Orthodox Jewish family and that was unwilling to withdraw. So now he's intubated in the ICU. At that time, intubated, I guess, in
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the OR, but soon to be intubated in the ICU. The following morning, the neuro ICU team felt that the decision not to proceed to surgery was the wrong decision and that he should have gone to
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surgery on Saturday night.
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Comments or questions, or what would you like to know about the case?
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As far as I see, there is cultural barrier in this case. I go to New York, say, Jewish, Iranian, what you're saying. I have the same dilemma with Spanish people. We're going to take care of
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people who are going to go to. It's a very hard thing to discuss And this one is also, with all my respect for the Jewish people, each
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culture has its own barrier and discussions. I think you're doing a big trap in this discussion. I love them. I have a lot of good friends, Jewish friends But this is something that really brings
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the brain in mind, also discussing some of them.
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different opinions, it's a very different culture, not your dad, you're an excellent thinker, but the opinion and distinction. So for those online probably can't hear, basically the point being
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made is that there are big cultural differences,
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which certainly play prominently here.
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Comments, questions, do you agree with the decision made on Saturday evening? Do you think that the neuro ICU on Sunday morning was right? What information do you want to know about this case that
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hasn't been presented?
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Daniel, it's fine. I'm sorry if
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you
39:54
want to take care of an urgent issue, but I guess, sorry I guess the big thing is that the argument from the ICU team was that the polls did not consider all the conditions. agency, the what if
40:04
situation, what if the interprene oil hemorrhage happened, which from which potentially good prognosis could be obtained so long as he gets through the one, two, three months of recovery. And I'm
40:18
wondering how much should we, when talking about bolster advanced directives, talk about all these hypothetical situations, or just put out a blanket, what if something happened where a dramatic
40:31
recovery would be required for a month, but has nothing to do with your terminal illness. How do you counsel like positions when talking because it's, it's a lot to handle for a patient to think
40:42
about all these hypotheticals when they have a lot going on already. You know, that's a great question. And that's exactly the issue that we were stuck with on Saturday night with a room full of
40:53
people.
40:55
I think that the answer is to focus on goals
41:02
on specific clinical circumstances.
41:06
If, in fact, a goals of care note had been written at the time that the pulse was completed that explained the entire extent of what the conversation was like. First of all, I really wanted to
41:19
know, what was this conversation? Was this a two minute conversation with the NP standing at the bedside? Or was this a two hour long discussion where they went through exactly why this patient
41:33
didn't want burdensome medical care?
41:37
That would have helped a whole lot in trying to interpret his post.
41:44
I think that it's incumbent on us to have deep enough conversations when we're going to be completing a document like this that we can justify the boxes that we check And if we, if the only, we've
41:58
only really gone into resuscitation, we probably shouldn't be checking boxes in part B and part C on the pulse. We just use it for resuscitation purposes. I don't know if I answered your question
42:12
one.
42:14
Yeah, that's very helpful. Yeah, I think the overall goals versus situations, I think that's important and so I'm going to keep in mind. What
42:24
I hear from you, thank you for this, this goals of care there's a difference between resuscitation and intubation.
42:34
And do not intubate, what does that mean under any circumstances or just during resuscitation? Is that what you're talking about in terms of goals of care? So both as part, I think one, two, and
42:48
three are A, B, and C. Right. But the first part is just the G and I, D and R. It's actually just, yeah, it's D and R, D and I, but only in the circumstance of your heart stopping. second
43:01
part is what we're talking about. Right. Yeah, so we're really talking about the B part, which is the selective treatment. And frankly, that's where we focus during the conversation on Saturday
43:12
night. I'll give you a bit more information. Although, yeah, you want to ask? Just a more general question. So even on the best circumstance, there can be like, you just don't know that the
43:23
patient has DNR, DNI, or like you said, someone just collapses out in the street somewhere, right? Or sometimes the situations. But if the patients get intubated and then you realize it was
43:34
against their wishes.
43:39
And the family does not want to withdraw. Does the polls still hold that you can, like, does the fact that they didn't want to be intubated in the first place mean that they would want for the
43:51
intubation to withdraw? And can you do that? That would be my interpretation, but can you do that? That's the operative question.
44:01
family, and you know, you think you know what the patient would want, and you have a family that wants something different. I would say that you can do following the patient's prior wishes, but
44:17
you need to do it carefully and in a well-documented way, and maybe even involving a mechanism that helps protect you and the whole healthcare system So you may end up wanting an ethics consult, or
44:30
you may want to go to the ethics committee to override the family. But in general, if we know what patients want, we can do that
44:40
as long as we're doing it in good faith. Yeah. I don't know. I wonder if this is a great lecture and it's really good to review all these terms, which I've been confused on, but I almost wondered,
44:51
like if this specific case is not an advanced care planning case issue, it seems like it's more of a theory of the. care issue, right? I mean, he had, he expresses wishes to somebody, right?
45:07
And then his goals and his, you know, the treatment pose of his patient was changed three times in 12 hours, right? And I think that the issue seems more that of the inelegance of that process
45:21
rather than specifics about his advanced care planning. There's no question that was a really inelegant process.
45:33
It is. It's actually as much about the way that we responded to this circumstance given the information that we had as
45:43
trying to figure out what is the right thing to do, which is what everyone was trying to figure out the entire time, the covering hospitalists, the neurosurgeons who were consulting But I guess
45:54
what's behind my statement is, there's like, I think, an implicit motivation of this lecture where I'll be. by a greater understanding of these terms, we would avoid the situation. I don't know
46:03
that that's true in this case, actually. I actually think it is true. Let's take a couple more questions and then I'll see if I can make it. One of the places where I think we get jammed up a lot
46:15
with this is that the patient specifies their wishes to a physician and they also nominate a proxy. Then when it comes time to make decision, we have to adjudicate the conflicts between the proxy
46:27
and what we know about how they express their wishes. Are there any tools for patients to use in expressing their wishes to their proxy? You can recommend. That is such a great question. So one of
46:39
the things that we do, like on the Heart Transplant Service, once we've completely advanced care planning, we make sure the family is there and we go back over the entire conversation. So that's a
46:50
tool, although that's a lot of work I will ask the patient, go home with this document now that I just copied and we just talked about. and go over it with your proxy. There's also other kinds of
47:03
tools. There's something called five wishes. They're three bucks a piece to buy them, but it's a great conversation tool that a whole family can work on. So there actually are a lot of ways to get
47:16
that to happen. So on Sunday morning, Dr. Blanco, Paige May, and said, What is this mess, Neil? And I said, You know, a big missing piece here is understanding what that NP talked about with
47:36
the patient on the 16th. And I tried to reach him on Saturday night before I walked into that room with the family. And on the spur of the moment, I couldn't. But on Sunday morning, I tracked him
47:47
down. And I said, Tell me about your conversation with this guy. He says, Let me tell you, talking to this guy is really hard I had to take the while, sit down with him at his bedside. And I
48:02
typed my questions into the computer and he answered me back in English that was really very understandable. And I would type the next question and he would answer me back and ask me questions and I
48:14
would type an answer. And this went on for about 25 to 30 minutes. So that made me feel really good about this conversation. But then I asked him, Tell me exactly what you talked about. And he
48:27
said, Listen He says, I don't want to end up in a really bad health state. I don't want to end up not being able to interact with the world. I don't want to get resuscitated. I don't want things
48:45
that are going to be very painful if I'm not going to get better. But he says, I never really talked with him about what exact future health states he'd be willing to be in other than comatose. And
49:02
he really wanted continued medical care to sort of keep him the way that he was. And he wasn't unhappy with his current quality of life.
49:11
So I said, if you had written that all into a goals of care note, I think this guy would have gone to the operating room directly on Saturday morning when he had that bleed because the neurosurgeons
49:23
thought that there was a reasonable chance of salvaging him And based on that, I actually asked him to write a goals of care note five days late in the chart on the right date, right, saying, this
49:37
is what I'm writing today on the 23rd of July, on my conversation on the 16th of July, and this is what we talked about. And I called Dr. Blanco and Dr. Vespa back, and I said, we made the
49:50
wrong decision last night because the pulse shouldn't have really been selective treatment The pulse probably there should have left a parplank or center. treatment and he should have written a goal
50:03
of care note, they could have allowed us to appropriately take him to surgery.
50:10
So I think that nuanced good conversations with good documentation really can get us a long way toward making the right decision. Will that always be the case? No. Am I sure that I'm right? No.
50:25
But I think that we made the wrong decision on Saturday night
50:31
And it turned out on Sunday morning the family had come to terms with what was happening with him and they actually decided that he probably wouldn't have wanted to have the surgery and they backed
50:42
off. Another interesting thing is that right after this very long family meeting, the neurosurgeon and I were standing outside the room talking about the fact that we had just decided not to do
50:56
surgery on him.
50:58
The main decision maker walked up to us and said I couldn't say this in the meeting, but the right decision was made.
51:08
Was it the right decision? I'm not a hundred percent sure. I feel pretty confident that
51:17
it went in the right direction, but I don't think that the post was completed perfectly. And I know we missed a goal to carry out that was important But to get to Dr. Burch Snyder's question, a
51:29
poll should reflect a patient's values. If resuscitation wouldn't achieve a valued health state, they shouldn't get resuscitated. If full treatment won't achieve a valued health state where a
51:40
patient doesn't want the burden of treatment, we pick selective treatment, avoid intubation, don't use the ICU, but we need to explain why and how that fits into the goals. If hospitalization is
51:53
too burdensome, check the no hospitalization box. If treatment is to focus entirely on comfort, we pick comfort or focus treatment. When do we not be following a pulse? As Dr. Berg Schneider
52:03
said, a pulse is a position order. Why wouldn't you follow it? Well, there's a big problem with pulse. If you complete a pulse that says, I want everything done,
52:20
CPR, full treatment, tube feed me, that applies to my current health state, it doesn't tell us anything about how you feel about future health states. In order to do that, you need to do
52:36
advanced care planning. You need to complete an advanced directive. If you ever complete a pulse for fully aggressive treatment, which is a valid legal pulse, you should be completing an advanced
52:48
directive at the same time, because that pulse at some point in the future when the patient suddenly bleeds in their head or gets run over by a tank. may no longer reflect what the patient wants
52:60
under those circumstances. Therefore, there are gonna be times that we don't follow a pulse, right? So if in order to provide medical care that's consistent with the patient's wishes, it's
53:14
permissible not to
53:16
follow a pulse, but only for cause. And those causes would be that the pulse isn't valid. In other words, it was never signed by the patient or is never signed by the doctor, which unfortunately
53:30
we see a lot. There's a strong reason to believe that it didn't reflect the patient's wishes. So this patient was comatose when they left the hospital, not expected to regain decision-making
53:41
capacity, but they happened to sign a pulse while they were in the nursing home. Good reason to say that's not a valid document. Or the clinical circumstances are very different now when they
53:54
completed the pulse There's good reason to believe that what they - put onto that pulse, wouldn't apply now. Usually that's in the direction of the patient getting much worse, but it couldn't be
54:05
the opposite. We've seen pulse to where a patient wanted comfort-oriented care, and the chemotherapy worked. Their prognosis is now excellent. That pulse likely doesn't apply under this
54:19
circumstance. Now, it worked, so the patient could tell me the pulse doesn't apply We wrote void, and we wrote a goals-of-care note. Yeah. What is
54:31
the difference between an ambulatory pulse and an advanced directive? Everything. An ambulatory DNR order, do you mean? That basically is an order not to resuscitate. An advanced directive is
54:45
something where you talk about your goals and how that would apply to future medical care
54:52
You should fill in an advanced directive for yourself.
54:56
Right, yeah. Like I'm serious if you're asking if you're asking does the inventory DNR order apply in the future and therefore it's similar to an investment and that way it's similar but that's
55:08
about the only way that it's similar. And that's the right is not reversible. And that's directive is not reversible if the person is revolved. Well, I would say that they're both reversible to
55:21
the same degree. To the same degree Yeah, I mean, post in general or not, you, you, you shouldn't ignore a post. But for cause under unusual circumstances, and these are the reasons why you
55:34
would do it.
55:36
You can ignore the post. Right. But it's only for cause. I know what circumstance can you reverse as directed. Oh, the same thing. If the person I've had people write in their advanced directive,
55:51
I want to be kept on life support No matter what, I don't care if it bankrupts my family. I don't care if I'm never gonna wake up for the next 50 years, keep me on life support. We may very well
56:04
say, this is not a goal of medicine, so we're not gonna follow it, right? That would be very uncommon. Slip situations, never, right. It's never, I do not wanna be resuscitated and somewhat
56:18
conversated. Is it a legal document? It is legal document, just like Pulse's legal document Yeah. I have a whole bunch of comments. I'll try to keep them very brief. So this is my case where I
56:30
was a nurse or an involved.
56:34
Number one, the legal issue came up with that initial consult to you from anesthesia. And so I heard that this patient was dean, do not resuscitate, do not intubate, or whatever the Pulse said,
56:48
after it had happened. To be frank So it
56:54
seems very reasonable to be a patient,
56:58
problem and consider surgery as oftentimes it's pretty reversible, the damage that can be done if you get there as quickly. So this gets very muddled in this particular case. But what I want to go
57:07
back to is,
57:10
I think the statement was from the anesthesiologist, we could be all be sued for operating on this patient that
57:17
just signed a poll, say, and they didn't want aggressive measures, like, oh, we can, you know, under sound mind and all that. So can you comment? I mean, now we also reversed them all the
57:27
time, right, quote unquote, for those of you not seeing my hands. So so how do we balance that problem, you know, is that even true? You can be sued based on
57:39
the pulse. I think that that statement that we could be sued for operating in the setting of this pulse is correct. And also we could be sued for not operating under these circumstances was kind of
57:53
semi threatened after our conversation by one of the more aggressive family members that that we shouldn't do surgery? Yeah, you're damned if you do, and you're damned if you don't people, lawyers
58:04
are coming to me all the time with cases like this where there's a pulse and they gave treatment contrary to the pulse, but with very good reason
58:19
and vice versa. So it's treacherous territory, which is why we have to document the best we can and write down why we're making the decisions we are. So second
58:32
comment about this case in some of the details and I'm not gonna try to get into details of this. I think we made the right decision because by the time we were gonna operate on him, he was very
58:41
sick and I don't think he had a very good chance of recovery. And there was a lot of, like you said, the family member said like he wouldn't want to live more disabled than he is now and got it.
58:48
So I think we did the right decision even though you said you're not sure. From my perspective as the nurse surgeon knowing he's gonna have a feeding tube 'cause he had before for a
58:55
prolonged reason from his laryngeal heeded mocha. et cetera. So I think we made the right decision. But then we made the decision. The next day there's a questioning of that decision. By that
59:04
point, there has been real harm done. Like because now he's been, the bleus actually was worse. The mass effect was worse. He had upward herniated. That had now been the case for 12, 14 hours.
59:14
So at that point, his prognosis is very poor in my mind. But then there's this revisiting of whether we should have operated on him. And instead the cat is out of the bag. Like it's too late, in
59:22
my opinion, for him to be salvageable at that point. But then we go back and revise all of our decisions and the documentation saying, Oh, this was never really a talk to him. So we're actually
59:32
like sabotaging our own decision in a way by going back retrospect and timing and dating the note from before we made the decision that he really have wanted surgery, you know what I mean? So I feel
59:43
like this was a I felt a little bit run fulfilled by the discussion with the person who had the conversation
59:52
about the pulse documentation and then going back and flipping it after he had been irreversibly harmed if you wanted to say he should have had surgery. You know what I mean? Yeah, I do understand
1:00:03
your point.
1:00:05
We never dated a note on a date when the note was written. That was not, but we did have him write a retrospective note. I actually thought the conversation you had with the family was superb
1:00:20
on Saturday night and did lead to a rational decision To, to not proceed to surgery. So I guess my question is, is, um, yeah, I mean, we made that decision and it's to my mind it stood and was
1:00:35
the right decision. Um, but we also did kind of hinge on the fact that he wouldn't want aggressive measures and then a day later a note shows up. Oh, we didn't really have that conversation. So
1:00:44
in retrospect, it looks like we should have had servers like in some ways, right? Yeah, maybe a little bit too much information is your point Well, once that decision's made, I worry about going
1:00:55
back and saying, oh. We actually, you know, didn't have all the information at that time and we may have read the wrong decision. Yeah, you know, I think that we make the best possible
1:01:05
decisions we can in good faith with the information that we have. And we, we usually stand up that way that this is the best information we had. It was the right decision for the patient under the
1:01:21
circumstances
1:01:23
I understand your point. It just was a bit of a sudden flip, which was concerning because now it's enough to be if you're going to say that we had this open windowed operating and we didn't. Yes,
1:01:33
you know, I mean, I still was stand by the decision 100 based on everything we knew about what you wanted. But I was a little disconcerted about that change in kind of tone the next day from that
1:01:45
from the side of the ethics. Yeah, so maybe, maybe my second note was not very good I guess that's the point I'm making, like, you know, once you kind of, like, take it apart. It's hard to
1:01:56
all of a sudden the next day once there's you know, you can't really operate anymore to say all week Maybe we should have operated by a new note. You know, anyway, that's my my big point point
1:02:06
point. I'm all taken Yeah, you know, you're not a lawyer, but
1:02:12
And I made this comment which apparently upset some people Because when we had a one of the UCLA lawyers come to us And a meeting like this, you're talking about a plastic surgeon who did a a breast
1:02:28
Augmentation and that the patient was unhappy with the results. Although there were no complications It's not what she wanted and she sued for battery because He did something against her wishes and
1:02:45
it went to criminal court because of battery You're not protected by UCLA malpractice. You're the high your own lawyers and you got to take it for a million dollars I brought this up about this case
1:02:58
on that day of discussion about if you do something against the patient's wishes It's not about practice. It could be considered better. Can you comment whether I was right? I was right. I think
1:03:10
it's because it was all based on that Yeah, I don't think I can comment. I I think I would want a lawyer to comment. I don't know right
1:03:21
I Don't think I can Let you one comment. I suggest and I have because as far as I know the culture of the Iranian Jewish I respect a lot Maybe you have to ask one of the rabbi to be with them because
1:03:35
they listen to the rabbi More than reason to ever they have a lot of influence on them in the Persian culture
1:03:43
This is something you have to have someone or what goes their language and who is a little bit knowledgeable about the medicine
1:03:52
So the suggestion is that we could have potentially involved the rabbi and in fact, that's a very good suggestion. And we wanted to. Of course, this all happened on Saturday. So
1:04:04
it was - And you
1:04:08
have to be the decision of 30 minutes? I mean, there's no, I mean, it's 30 minute decision. You gotta make a decision. You're there with a family. We gotta, you know, this is it. Like, time
1:04:13
is hurting the patients.
1:04:18
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