Episode 43: Sedative Intent

When all our best attempts fail to relieve suffering, we sometimes turn to palliative sedation to the point of unconsciousness. But how do we know if and when such a drastic intervention is the right choice? Sarah and Dan chat with Justin Baker and Tyler Tate about practical and ethical approaches to communicating about and implementing sedation for pediatric patients facing refractory symptoms at the end of life.

Transcript

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Sarah Dabagh: 0:01

Hello. This is Sarah...

Daniel Eison: 0:02

...and this is Dan.

Sarah Dabagh: 0:04

And we'd like to welcome you to PediPal, a monthly podcast about all things pediatric palliative care.

Daniel Eison: 0:12

The views in this podcast are ours alone and do not represent our respective organizations. They do not constitute medical advice.

Sarah Dabagh: 0:20

The jokes in this episode are ours alone. A, because this is not a very joke friendly subject we're gonna encroach on today, but B, because we had a, about a year long setup for a joke that we never got to tell. So I'm going to tell it really quickly. Get this energy out of our system, and then we're going to get to the meat of the episode. But we originally scheduled this recording over a year ago, Dan, when you first knew you were going to go for your BMT. And today's topic is palliative sedation, and we had set up a recording. We had everything ready to go to announce your BMT at the end of this episode by saying we are going to palliative sedate the the podcast. And for some reason, this joke got us through the many, many months of planning. And you know, things happen the way things happen in life, and we didn't get to tell it. So here it is in the universe for everyone to enjoy. And by everyone, I probably just mean the two of us. And then we will get into our subject. We have two wonderful guests today to talk about palliative sedation.

Tyler Tate: 1:25

Hello, my name is Tyler Tate, and I am a clinical associate professor at Stanford University School of Medicine where I practice pediatric palliative care, and am core faculty in the Center for Biomedical Ethics, where I do pediatric and adult ethics consultations.

Justin Baker: 1:42

Hello. My name is Justin Baker. I am also known as the chief koala bear and maybe previously known as that on our PediPal series here. QoLA stands for quality of life for all. I'm the chief of our Division of Quality of Life and Pediatric Palliative Care here at Stanford University, and I'm an attending physician on our pediatric palliative care team. I'm an oncologist and a pediatric palliative care doc.

Sarah Dabagh: 2:05

I wonder if you want to actually start by telling our listeners, maybe, as if they were patients or parents, how you would define palliative sedation.

Justin Baker: 2:15

I think when we start to talk about the definition of palliative sedation, I think the most important thing is that we're really precise in what we're talking about, and precision matters. For the purpose of this podcast, we'll mostly be talking about palliative sedation to the point of unconsciousness, and that's in contrast to what many times is spoken about as rapid titration of opioids or rapid titration of benzodiazepines. It's really the concept of at one point, the patient could potentially be awake, alert or having cognitive intactness, and then you provide an intervention, a medication, that would then lead to that patient no longer being cognitively intact or alert. And so when I think about explaining this to families, I'm thinking about palliative station being a medical approach that we use in situations where a child or a young adult is experiencing intolerable, mostly physical suffering, and that we have done our very best to address that suffering with non pharmacologic, pharmacologic measures, really Thinking about the concept of total pain and total suffering, we've addressed it from every single angle. We have multiple people who've weighed in, and even though we've done our very, very best, we have been unable to effectively treat that physical suffering. And this patient also is imminently dying. And when I talk about imminently dying, I'm talking about the last days of life, and both of those are absolutely essential components of it, and they absolutely need to be determined by multiple disciplines, multiple perspectives, and this needs to be a very purposeful conceptualization of each of those issues, of have we addressed the physical suffering, And is this patient imminently dying?

Tyler Tate: 4:01

Yeah, I think that's especially key when you mentioned that they are imminently dying, because in the adult literature, at least, where this is like, everything in adult world happens a lot more than in pediatrics, because there's just so many more patients who are critically ill. Some of the hottest debates are around the appropriateness of palliative sedation for various types of suffering, and there's a big debate, for instance, if existential suffering is an appropriate space for palliative sedation generally, generally, people would argue that it is not, because existential suffering is actually something that can happen To anyone, whether or not you have a terminal diagnosis, and it's not something that is directly linked to the disease. And palliative sedation is something that is generally considered to be appropriate when it is palliating, something that originates from the body, from the diagnosis itself.

Justin Baker: 4:59

And I think a couple contrasting points, and Dr Tate brought this up really nicely there. I think you also have to recognize that palliative sedation to the point of unconsciousness is different than proportional sedation, and it's different than, as I alluded to, the rapid titration of opioids or benzodiazepines in the context of a patient who is having significant physical suffering.

Sarah Dabagh: 5:24

So with many things in palliative care, we have a little bit of a label problem as you're describing it, with this appropriate rapid up titration of opioids or benzos for a symptom, when does it cross the line into palliative sedation? And in crossing that line, are there extra things that need to be done, spoken to or prepped, whether or not it's getting additional people involved, whether or not, based on your institution, it's bioethics or a different kind of consent conference with the family. But when do you, either intentionally or intentionally sort of start to enter the territory of palliative sedation as you're aggressively medicating a symptom?

Justin Baker: 5:58

That's great. Sarah, I'll start with that one, trying to capture a symptom, trying to catch up to being behind in treating pain or treating dyspnea or treating even potentially delirium or what people might label as terminal agitation, as that's happening, I would encourage us to be contemplating, do we really think we're going to catch up? Do we really imagine that we're going to get ahead of this? And if we don't, if we are worried that we may be heading down a path of a symptom cluster that is in calcitrant to all of our treatment interventions, I would encourage us to engage multiple people. So if pain team or anesthesia has not yet weighed in, I would encourage us to engage them. We should have full interdisciplinary collaboration. So we should be thinking about psychology, social work, spiritual care, and really conceptualizing total suffering as we're thinking about this, we should be making sure that we've used all the non pharmacologic approaches that we possibly can. And then as we weigh in on this and we're contemplating is this patient also imminently dying, I would encourage us to involve ethics. Is the family well informed, and I'm going to ask Tyler to weigh in on this in just a minute, and so you have a little bit of what I would recommend as a beginning of a parallel processing like you don't want to get further and further behind on the symptoms. But certainly with experience, what I've started doing is starting this parallel processing earlier and earlier, because even if you don't employ palliative sedation to the point of unconsciousness, you at least are setting up a pathway, an algorithm, but you've started down a path that you don't have to start after you determine that this pain and symptom management has failed.

Tyler Tate: 7:35

Yeah, I think another important thought that you just mentioned is that, you read a lot of papers about palliative care and palliative sedation, and you talk about palliative sedation in the pediatric palliative care space as if we Pediatric Palliative Care Physicians should be doing it, but I have never started propofol on a patient. I've never started a barbiturate. I did an adult palliative care fellowship at Duke, and I think twice I started ketamine. You know, if we're just thinking about the medications, are a little bit further out. I think that we have to sort of be honest with the fact that pediatric palliative care, the bulk of what we do at most institutions, and correct me if I'm wrong, is goals of care work.

Justin Baker: 8:16

I think that's really well said. I think even as you become more and more comfortable with it, after 20 years at St Jude, I had done this quite often. But when I say I had done it, it is really always in collaboration with critical care, involvement with anesthesia, with our team, with pain team. It was always this very collaborative approach. Most of the time, the people actually prescribing, actually writing the order for it, were involved or engaged in some way with anesthesia for us, that's with our pain team, that's who is mostly actually doing the prescribing, but it was in really close consultation with us, and the people who actually were most familiar with the process and the steps that we need to go through actually were us in palliative care, right?

Sarah Dabagh: 8:56

Some of our listeners who are at smaller programs, I myself am in a smaller program, and there's this sort of uncertainty in pediatrics built into a lot of what we do in pediatric palliative care. But there is an uncertainty when you don't have a readily available pain team or readily available sort of anesthesiology, or even readily available colleagues to weigh in and be sort of other palliative voices. And there's this tension of, have we done our very, very best to control a symptom? And then there's this tension of, Am I sure that this patient is imminently dying? And if you look at the palliative sedation literature, which I remember, I think doing the first time I was involved in a palliative sedation case, and saying, you know, how long do people live who are receiving palliative sedation, you will find case reports. A lot of them are home based, hospice based, where people are living weeks at home getting palliative sedation. And so there's an acknowledgement there that we are not great prognosticators in general, but there's this fear and worry. And I speak as someone who's the only palliative care physician who's doing pediatrics at my institution, and I wonder if you have advice or even. Commiseration, whatever it's going to be, for those of our listeners who are at smaller programs or who have a lot of worries about this uncertainty or about this process you've described without the support you've described.

Justin Baker: 10:13

That's such a great question. Sarah, one of the things when I think about how to encourage colleagues that might be at smaller programs to think about this is to recognize how rare This is, that we need to employ this intervention, and how deliberate we are when we deploy it. And so when we, for instance, here at Stanford, we just determined that anytime there's a situation where there is some level of prognostic uncertainty, or we need to figure out, Is this patient potentially appropriate for palliative sedation? In this particular case that we're talking about, we will call a huddle. We're going to have an escalation path to where we actually would bring our palliative care colleagues together first to think through this algorithm, to think through these two scenarios of recalcitrant symptomology and imminent death. By pointing that out, I'm hoping that you also realize that this level of deliberate, this kind of really explicit approach that we take, I would encourage you as a small program to think who are my huddled people at your institution? This could be critical care. It could be somebody from anesthesia. I would encourage in advance for you to think of who are my people, who do I come to with these specific two questions of, have we addressed the symptomatology in the most holistic way possible? And are these symptoms recalcitrant? And is this patient imminently dying? I'd love to hear your thoughts.

Tyler Tate: 11:40

Well, I think you sort of trouble our criteria of imminent death with that sort of example of someone living for a long time. I do think, though, there is something somewhat comforting about the fact that these patients on palliative sedation could live a long time, which is that we're not causing their death with palliative sedation, right? And that's the big worry. Maybe a little bit later, we can get into some the ethical frameworks that kind of can wrap around palliative sedation, including the doctrine, double effect, intentions, these sort of things. But I think just from a very on a very basic level, all the data that I reviewed shows that palliative sedation does not lead to a quickened death. This is why proportionality is baked into it, that you're not trying to extinguish all consciousness immediately by using really high doses, but going up in an incremental fashion, even when we're specifically attempting to bring about a loss of consciousness.

Justin Baker: 12:37

One other aspect that I did want to bring out here, because we've talked about how critical it is to be precise in our conversations and in our definitions, and Tyler and I both talked about this, actually, before coming on the podcast, if a patient is imminently dying, and it's quite clear, and it's also quite clear that a patient has this progressive and impossible To treat in other ways, a symptomatic suffering, physical suffering due to these symptoms, this is an incredibly valuable intervention, and is one that is not ethically charged. That doesn't mean it's not morally distressing or socially distressing, or even culturally distressing, because it's quite rare that we do it. There's incredible staff distress also, and I think a key part of deploying this algorithm of thinking about palliative sedation to the point of unconsciousness is a recognition that we need some sort of staff debrief. We need some sort of staff coming together to describe and discuss this. We need to make sure that the bedside nursing staff and all the other staff that are there are really being appropriately supported both during this time and after the death of the patient. And I will specifically call out how we as a field are not very good at addressing these kinds of issues overnight and on weekends. And if you imagine the likelihood that a patient is to die, it's about 65% there's gonna be night or a weekend, and 35 if it's gonna be Monday through Friday, you know, eight to five, yeah. And so we really have to recognize that these resources are needed at off hours and that the staff need to be supported at these times as well. But by the time I left St Jude, we had done it enough that it really became more like a rare procedure where we went through a checklist approach and it was no longer causing the level of distress in implementing that procedure. And it was also one like as we went through the process, it became more and more comfortable for us to think about it earlier and earlier, and then, as we were layering on new techniques we were using, we actually had to use it less frequently. So it was interesting. We probably thought about it more often and implemented it less often.

Sarah Dabagh: 14:54

I find the idea that something is morally distressing but not ethically charged interesting because. Many people, those feel like they are touching each other and Tyler, I wonder if you can expand on that a little bit, maybe how something can be so morally distressing, but not ethically charged.

Tyler Tate: 15:11

Totally. This kind of cuts down to like, what is ethics? Which is something I think about all the time, both because it's I have to for my job, but also because I find it fascinating. Just because something seems like it's an ethical problem doesn't mean it is. You know, we had an ethics committee meeting this morning, and we worked systematically through a couple of cases, and what we found for at least one of them is, oh, everyone was very anxious. Everyone felt like there was some problems with this procedure or whatever we were doing, but at the end of the day, it actually came down to like, just the fact that medicine is hard, and when people are really sick, it is distressing to care for them. So this is why, when I'm talking, when I'm giving a lecture on moral distress, and this is related to what we're talking about today, I say actually, for something to be morally distressing. It's actually a pretty small slice of the pie. The larger pie is just distress. And distress is part of healthcare, and you shouldn't go into healthcare if you are not prepared to have some at least low levels of distress, because caring for sick and dying people is really freaking hard. One of my favorite philosophers, Ludwig Wittgenstein says the limits of our language are the limits of our lives, and so we have to actually develop a language and a grammar to talk about the moral dimensions of our lives and our pediatric palliative care practices, and that will then help us disentangle things that are or are not morally problematic despite the fact they will be distressing. So I think that's kind of how I think about it. In the case of palliative sedation, what can be distressing, and then we have to ask the question, Is this actually morally distressing? And is it actually immoral, or is it sort of an ethical? Question is, if we're doing palliative sedation in order to get rid of a certain form of suffering, most likely physical suffering, maybe psychological suffering, in the sense of just like overwhelming anxiety that is around and related directly to the diagnosis. If we're doing that, that just comes something that's completely separate from causing the quick or early death of the patient, right? So, but in practice, those clean distinctions don't always hold together, right? And that's what makes this really tough. So that's a long way to answer Justin's point, which is, when done well, something may seem to be morally problematic, but it's actually not, because what you're doing is not actually participating in something that is wrong, killing, but rather you are doing something good, which is to decrease physical suffering. So when I'm getting more in the weeds with, for instance, nursing staff or residents who are distressed about about this, I ask them, Well, what are your intentions? This is where the doctrine of double effect and ethics comes in. And just I were talking about this, actually, I don't think and this ethically, we need the doctrine of double effect to justify why palliative sedation is morally acceptable and morally justified, because all of the studies we have show that we're not actually making patients die faster. So it's actually not a secondary effect of palliative sedation in reality, right? Just as a caveat in the field of ethics, a lot of people just say that I am wrong in that analysis, and that all that matters is the outcome of a situation that would be a utilitarian and that intentions don't matter. All that matters is the upshot of the situation. So it just is, just as a mark that in ethics, there are people who would say that that is not the right way to perform an ethical analysis of a situation. I very much think it is. There's a long tradition that that comes out of going back to Aristotle, I think that it also is from the perspective of moral psychology such a powerful tool. So then we talk about this practice with people, we say, "Look, look what you're intending to do."

Justin Baker: 19:00

And as we're doing education about palliative sedation to the point of unconsciousness, it's helpful to bring up principle of double effect, yep. And at the same time, the likelihood of that happening is almost none. The reality is so you almost have two issues that come up. We have a chance to educate about, even if a patient were to die as a secondary intention of this, the intent is what matters, and secondary effect, the secondary effect exactly, and the fact that this is very unlikely to be the case. And so I think we have both a buttressing background and exactly an epidemiologic statement of how rare that is, and the reality that probably the opposite happens, that probably the relief of suffering prolongs life. Yeah, and, and so I think there's really strong kind of anticipatory guidance that we can provide to staff around that.

Tyler Tate: 19:54

Totally. One of my favorite podcast episodes is the one on interpret, the y'all did on interpreters I make everyone listen to it. Because there's that just remarkable moment where, I think it's one of the Arabic interpreters says that it makes no sense to say, listen to the body of your child, which we say all the time in pediatric palliative care. Oh, you are not making the decision. Your child's body is making the decision, right? And that's it's an escape for guilt. That's one of the reasons we say that. Another big reason is because we literally are listening to the body. It's like, this is what naturally occurs when you have a really serious diagnosis. And so I think that's what we're doing when we do palliative sedation well, is we actually are letting the body, quote, unquote, make the decision of when it is time to die, rather than being the active agents in that process.

Justin Baker: 20:42

It's really interesting, I think when you talk about interpreters in this case, because I think what you've also heard us say is how important the language is that we're using. And you know, the language that you've heard throughout this talk so far are things like palliative sedation to the point of unconsciousness. We're very deliberate in using that entire phrase, very deliberate in using proportionality, yeah? Very deliberate in using intent, very deliberate in conceptualizing this interdisciplinary, interprofessional, multi team, algorithmic approach towards caring for patients with symptoms that are otherwise impossible to treat and patients who are imminently dying, yeah. And so I think precision in that language is absolutely essential, super important.

Sarah Dabagh: 21:25

We've talked a lot about language precise, the way that you're defining things, the way that you're having these conversations. What does documentation look like?

Justin Baker: 21:34

It's a fantastic question. So what we have done has been to really over emphasize the transparency of the approach that we take as we were building this out. We felt that way even before families could access their medical records so easily. And now, with the Cures Act and with the rapidity and regularity with which families are looking through the chart, I think we really have to think about that kind of documentation as well. Refractory is one of the words that I think is both a word we might use in everyday English and something we could use to let people know how hard we're trying to treat this particular symptom. And so I think we have to imagine this a little bit understanding that this is a incredibly distressing moment, and I would encourage us to be transparent in our thoughts, but transparent in a way that a family is likely to read this in the future, and we have to be able to communicate with our colleagues the very thoughtful process that we've gone through. And I would also be really cognizant of making sure that there is good documentation of all the different people who've been involved in the various layers of the process. I can't tell you how many times a nurse has come up to me and said, I'm so thankful you all are involved as a palliative care team. And I would say, What did you think of our note? And they might say, Well, I didn't actually read your note, but I saw that you were involved, and that made me feel better. And so I think that's the same with ethics. When I think about it, I'm imagining a note coming from ethics, a note coming from palliative care, a note coming from the primary team, and then I think another piece is making sure that all of those are lining up with, obviously not the same documentation, but similar approaches and similar verbiage.

Tyler Tate: 23:19

I agree. I don't think I have too much to add to that.

Daniel Eison: 23:22

So I'm making a list of all the people I need to have in my huddle before I do this, and it's now including an ethicist, a philosopher, a lawyer, a chaplain, maybe representatives from several spiritual communities. And you know, I'm wondering also, as we talk about this in all its multifaceted dimensionality. Of you know, it's it's complicated. What language do we use with families? And frankly, how do we talk to children about this? Are there ways that you boil this down for those who aren't familiar with double effect, for instance?

Justin Baker: 23:57

When I talk to families, it's generally speaking in the context of an overall goals of care conversation, and we have shifted goals to a primary goal of comfort and a recognition that this child, this patient, is imminently dying. And so a lot of time this has happened after multiple conversations, there's been what we might talk about as a cultivation of prognosis or seed planting that has happened across time. I hope this isn't the first conversation somebody is having to have with a family, because it's such a complicated conversation to have as we now understand the goal, the primary goal to be comfort. What we do is we would talk to this family, we talk to the parents first, and say we are doing our very best. And I just want to tell you that we are really struggling. We have done this and this. We've increased the opioids. We've increased the benzodiazepines. You've seen how often people are coming into the room. You've seen all the different assessments and approaches that we've taken. And despite all of that, we can't get this symptom under control. Yeah, and then we'd start to talk about one option we might want to consider is helping your child sleep, or providing anesthesia, basically to make it so that your child is unconscious. And this is something that in this particular scenario, we've talked to our friends and colleagues, would not only be appropriate, but we think could be helpful. We want to begin to explore that with you and think about that with you. It would mean we could no longer directly communicate with your child. We're not sure how much your child would hear or process through that. We certainly would encourage you to continue interacting with your child throughout this process, because they can sense you, we think. But I want to open that conversation with you and see what what your thoughts are. The reality is, with the vast majority of children that are going through this, or young adults that are going through this, it's most common that we're using this in the context of a patient who has fairly limited consciousness. Anyway, yeah, they are experiencing almost a suffering nos and like, not otherwise specified, like it's very complicated. You can't picture. Is it pain? Is it dyspnea? Is it anxiety? Is it just an agitation? Is it delirium?

Tyler Tate: 26:09

Suffering is baked into the reason we do palliative sedation. So we're never far from talking about palliative sedation. We're talking about suffering. Or, I should say it's relevant. This is sort of ethics adjacent, but it is helpful when we're thinking about our responsibilities and our ethical obligations to patients and their suffering. What I've sort of been doing is to ask people to not just say the word suffering, but actually to always predicate it. Let's actually talk about what we're talking about. Let's get clear on the form of suffering and the meaning behind that word, are we talking about physical suffering? Are we talking about psychological suffering? Are we talking about social suffering, which is very real, disentangling the kind of web of suffering that can sit and stick to these really tough patients is really important, because it actually helps us articulate our ethical responsibilities, and then again, be able to sort of tell that story down the road, whether we're a clinician who feels like, wow, did I do something bad in the situation, or a parent who feels like, wow, was I not? Were we not aggressive enough in treating that dyspnea? So I think that's something like having a real taxonomy of suffering, talking about the kinds that we are referring to, and then asking, Well, what intervention treats that form of suffering? I talk about suffering as like a prism. The word itself doesn't actually do a lot of work until it goes through the prism. It splits out. It's an it's some form of suffering specifically. And then that allows us to actually take the interdisciplinary team approach to the problem, and we can figure out who is the right person for this job, this form of suffering, to care for this person.

Justin Baker: 27:44

I think it's such an essential component of the conversation, though, and I'd say one part that you didn't touch on yet is if we think about this concept of the operationalization of suffering, and how we as clinicians, sometimes when we kind of come into a room with a particular bias, and we might sense suffering, or we might even say, I need to try to convince somebody of something. We might use this concept of suffering before being filtered through that prism, yeah, and just bring it up as a general construct, yeah, with a goal in mind. I might walk in and use kind of the club of suffering to say, I feel like because your child is suffering, we need to do this before deeply exploring what you just talked about, the prism of suffering. Yeah, so I kind of come in with my preconceived notion that this child is suffering, and so I need to do something else about it, without using humble curiosity to best elucidate that components of suffering through the prism you just described.

Tyler Tate: 28:43

Yeah, no, I get you. We have a paper that just got accepted a few days ago, that's coming out in JPSM, where we evaluated claims of suffering in the PICU here at Stanford. And one of the things we found was that parents use the word in a whole diverse set of ways, whereas physicians generally used it as a linchpin for an action. Which is not surprising. There are other papers and other studies that have shown this. In the study of rhetoric of medicine, there's all these interesting sort of discussions about how every patient doctor interaction is actually a rhetorical encounter where two different parties are trying to get their way. And it doesn't need to be antagonistic. It actually can just be framed as like we're actually trying to figure out what to do. We're trying to figure out how to partner. This is what shared decision making is in the negotiation around, is the suffering present? What kind of suffering is present? And then what should we do about it? Perhaps. And then ask the question, is palliative sedation? The right approach for the problem. Is this the right tool for the problem? I think that getting clear on on the type of suffering that we're talking about can be really helpful in that regard.

Justin Baker: 29:50

That's beautiful. It's really well said.

Tyler Tate: 29:52

I do wonder if we should at all talk about the kind of patient who maybe were wanting to sedate them to unconsciousness. That then they don't die. How that relates to the importance of having strict criteria? I mean, that's where you get into some of the most muddy waters

Justin Baker: 30:08

A place where we've run into some difficulty a few different times, is in patients who we thought might have been imminently dying, but we kind of debated it, and we thought to ourselves, this probably meets the definition, but might not. And I think had we had a little bit more deliberation around that issue, we would have recognized this patient probably is not imminently dying, imminently dying within the next few days. Where that really creates problems is all of a sudden, if you use palliative sedation to the point of unconsciousness, and this patient hasn't died, 456, days later. And perhaps as part of that conversation, as you see in the algorithm, we have stopped artificial hydration, nutrition, we have to think, oh, boy, where are we at? What's happening here? And in two different situations, we actually decided to withdraw the palliative sedation to the point of unconsciousness. And in one of those two, we left it off, and the patient lived for a while, and actually we're able to then get the symptoms under better control. And that was really interesting, because it almost functioned like a reset, maybe something like we would use ketamine for the other patient, though, became more alert. The symptoms continued to be really refractory, and we really struggled. And we probably struggled for another 24 hours, trying to get on top of them in other ways, and we couldn't, and we restarted, in this case, the propofol and that patient died within the next 24 to 36 hours, the level of distress that that patient caused us in the construct of us, almost like we just talked about suffering, like, kind of almost forcing them into the box of imminently dying, because we knew that was a part of the process, instead of really digging deeply into it. Do they really fit and defaulting? Kind of like our hypothesis should have been, that they don't like that should have been our null hypothesis, and we should have had to prove to ourselves that they do fit in the box, and we kind of defaulted on the wrong side.

Tyler Tate: 32:08

I think that's interesting too, because as a historical remark, palliative sedation used to be called terminal sedation, and then folks said we shouldn't call it terminal sedation, because it makes people think that we are actually killing the patient. But there are actually folks who have argued lately, recently that we should call terminal sedation for a different reason, which is that it's only appropriate for patients who are terminal. Yeah, that latter way of thinking about it is probably right, even though I like the term palliative sedation more and yeah, and I think to your point, it's like, well, what's wrong with the with a really extended period of palliative sedation? I think there's a couple things. it takes its toll on people on staff, to have a patient who is sedated to unconsciousness for a very, very long period of time. It also, if you're not in the last days of life, there may very well be other better ways to treat your pain like, you know, local blocks or these sorts of things. That's why proportionality is built in. You do all these things, you build up to that to make sure that this is the right tool for a problem. And then, thirdly, and you know, a lot of folks in the more philosophical or bioethics literature write about the goodness of consciousness. I don't think you need to get too philosophical. I've had so many parents tell me, like, I want my kid to be awake. I don't want to just sedate them down, like, if it's at all possible for them to have some interactions with us, with their animals, with their siblings. Like, that's what we want, for us to be able to say this was a good death. We don't want to lose that unless we absolutely have to.

Justin Baker: 33:45

It's actually quite common that in the middle of this process, both as almost like a check for the staff, but also it's quite common at the request of a parent. Do we still really need this level of sedation? We would lift it a little bit, and you would again see that symptomatology that is actually in some ways reassuring of that process. Yeah, and so I would say that I think even in the context of proportionality of sometimes testing if you could pull back at all on something like propofol and lifting it and seeing what happens with an ability to quickly turn it back on or to go back up, that can some, in some ways, be reassuring, both to a family but also to staff. Sometimes we may not have been as deliberate as we should have been about ensuring that everybody was on the same page, and the pre work in this process is essential if Tyler and I are not in agreement on the refractory nature of the symptomatology or of the fact that this patient is imminently dying. We have a lot of work to do, and that work is between us. That work is, you know, a patient care conference with staff only. We have to make sure we're on the same page, and it's sometimes difficult to get there. I've gotten in. Trouble, or we as a team have gotten in trouble where we got as many people together as we could, but there were some really key parties that may not have been there. And you know, this is usually happening pretty fast because the symptoms are so distressing, and so it's happened multiple times where very important members of the team couldn't participate in one of those care conferences. We had unanimous agreement, but this person outside that circle that should have been predictably important to us, we just kind of bypassed, and in the middle of that, then a lot of work needed to happen, while we're already dealing with this patient who's really struggling, this family who's really in the middle of a difficult time, and now a staff member or two who disagree potentially or needed more information, more anticipatory guidance, more education about why this might be an appropriate intervention. Yeah, this education piece that we went to about the doctrine of double effect also, how rarely if ever that needs to apply, is such important pre work that we need the white end?

Tyler Tate: 36:01

Yeah. Martin Luther King, Jr, talks about how the ends of something are prefigured in the means. And I think about this a lot in regards to these conversations around double effect and kind of sedation, that maybe sound a little weird, but I do. And he talks about how there's a lot of different ways you can come about to acquire a plot of land. And actually, the way that you do acquire it changes what the land is. It's stolen land, it's purchased land, it's inherited land, and that changes all the social dynamics that operate with that plot of land in the future. And so you cannot divorce the means from the ends. Unlike some utilitarian ethicists would perhaps argue that is a helpful framing for me to talk to people who are participating. This is the patient is going to die, but you didn't. We didn't kill them, because what we did was provide really good palliative sedation, and their disease took its toll on their body. And so then the people who tell the story down the road, whether that's the parents or the nursing staff or the palliative care docs, tell a different type of story, because the ends are prefigured in the means

Daniel Eison: 37:16

Otter does automatic AI summaries of all of our episodes. And so as I was looking back today at the transcript, the AI has summarized the interview we did, and I didn't count, but the number of times it says the phrase "clear communication and documentation," just in the summary, it's like, "Tyler and Justin talk about how important it is for there to be clear communication documentation. Sarah and Dan agree it's really important for there to be clear communication. Tyler and Justin agree that it's important to have clear communication," like over and over and over again. So I'm starting to think maybe one of the take home points for this episode is that it's really important that we have clear communication and good documentation when we're doing palliative sedation.

Sarah Dabagh: 38:01

Which is funny, because that feels like a very medical, legal take home point, which is not what we were really aiming to talk about, but it's an important part of it.

Daniel Eison: 38:09

Yeah, we did talk about it being ethically sound, right, and making sure that our intention is good, but I think a lot of the clear communication was about like making sure there's clear communication with the family, making sure there's clear communication with your colleagues, you know, making sure that everyone's kind of on the same page about what this is that we're doing and why we're doing it, which, if you think about it, is kind of par for the course for palliative care, for everything in palliative care, but this just seems sort of like palliative care to the nth degree. Thanks for listening. Our theme song was written by Kevin MacLeod. You can follow us on Bluesky, where our username is pedipal.bsky.social. You can find the notes for this episode and all the others on our website, pedipal.org, if you'd like to submit thoughts, objections, or ideas for future episodes, please reach out through the email on our site. This has been PediPal, see you next month.

Sarah Dabagh: 39:02

We should intro with that joke that we never got to make, and then, you know, we laugh. No one else laughs.

Daniel Eison: 39:11

That also could be the tagline for our podcast.

Sarah Dabagh: 39:13

We laugh, you don't: Pedipal.