Sarah Dabagh: 0:03

Hi, this is Sarah,

Daniel Eison: 0:03

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 institutions. They do not constitute medical advice.

Sarah Dabagh: 0:20

They may constitute some ethical advice, but I think we'll get into that a little bit as we chat. So Dan, I'll tell you a little bit about my thoughts as we came into crafting this episode. We when we talk about pediatric palliative care teams and how each palliative care team is different. Oftentimes, you and I will reflect on sort of the different circles of overlap that palliative care will sometimes fill into based on the existing ecosystem of the hospital when the team is created. And the biggest overlaps, I'm probably leaving a few out that I think of, are pain, complex care and ethics. And I think ethics is the one that makes people feel the most unsure about what that overlap should look like, what that relationship would look like, and that's what we wanted to explore in this episode.

Daniel Eison: 1:02

So we've invited on two guests, both of whom have had careers that have taken them through both fields.

Bob Macauley: 1:12

I'm Bob Macauley. I practice pediatric palliative care as part of the bridges team at Oregon Health and Science University in Portland, Oregon, and before that, I was at the University of Vermont for 15 years, where I did both clinical ethics as well as pediatric palliative care.

Sarah Dabagh: 1:28

So maybe I'll jump in with a question that comes off of that very naturally, which is, why didn't ethics follow you to OHSU?

Bob Macauley: 1:35

That's a great question. Balancing clinical ethics and palliative care, whether pediatric palliative care or adult palliative care can be a challenging endeavor. They both engage in, oftentimes a similar set of patients, patients facing complexity, oftentimes facing difficult decisions at the same time. I think they bring complimentary perspectives, ideally so. And to put it bluntly, sometimes the two relative services don't always either see eye to eye or sufficiently recognize in the other what they bring to the table. There are some places where everybody does palliative care and something else, whatever their other specialty, if they have another one might be, and there are some places where people only practice palliative care, and if everybody's doing something a certain way, then it fits and it works. If you're in a place where everybody else is doing it a certain way and you're not, as was the case with me in Vermont, then sometimes it's more difficult to feel like you're part of a team and that everybody is working together towards a common goal. So when I came to OHSU, I decided to leave a tiny little bit of complexity behind and focus on where my heart really was, which was with pediatric palliative care.

Sarah Dabagh: 2:53

I like that you mentioned the two sides, understanding and appreciating each other, because I'll tell a story, which is, I've been in my current position for just over two years. And when I first came, I had a patient who was very complex, and then bioethics came to introduce themselves to me and to get involved. And then this particular bioethicist started explaining his plan going in the room, and said, You know, I'm going to sit down with this family. I'm going to ask them their hopes. I'm going to ask them their worries. I'm going to ask them, you know, what, they understand. And I had a natural sort of bristling reaction, maybe as a new employee who, you know, wanted to feel important and worthwhile, but I had this feeling, so, hey, that's, that's my job. And hey, that's what I went in there, and I did.

Bob Macauley: 3:33

I think a lot of people have that same reaction. And I think, you know, little history could be helpful here, because palliative care is sort of the new kid on the block. In some ways, we are a relatively new specialty. On the first time we had our specialty board exam was 17 years ago, which is really not that long ago in the grand scheme of things, it's also probably worth noting that before ethics got involved, way back when, before there was such a thing as clinical ethics, because that's actually kind of a new specialty too, just not as new as palliative care. When a patient said they didn't want to keep going with treatment, the first call was to psychiatry, because people assume that you must be suffering from mental illness if you didn't want to live as long as possible. Fortunately, we've come to understand that that's not the case. So I can kind of understand where ethics comes from, because for a while, ethics was your call, and now palliative care shows up, and palliative care first of all, can bill for their services, which ethics typically doesn't. So that makes the hospital bean counters happier. I think that palliative care has a little bit more star power than ethicists, especially with Atul Gawande writing his book and his article in New Yorker that preceded the book. And so I think sometimes ethicists sort of feel like I went into this field to do this important work, and now, when I get really involved in this important work, they call in the palliative care folks who end up doing what I actually like to do, and think I'm pretty good at so I think that the ethicists sometimes have difficulty with that. And by the same token, just to try to be fair about it, I think that sometimes the palliative. Care folks may not recognize as fully what ethics brings to the table, both in terms of knowledge, so that while ethical decision making is one of the eight domains of the national consensus project, just because you're trained in palliative care means you're probably more ethically nuanced than the average bear, but you're also potentially not a trained ethicist when palliative care is already involved, ethics can bring a greater degree of impartiality and analysis. That doesn't mean that palliative care isn't necessary, but can add to what the palliative care team is already bringing.

Daniel Eison: 5:33

The other week, I was consulted by a team, and they asked me, by the way, do you also think we should call an ethics consult? The question is, you know, well, when is that right? When are we stepping outside of our palliative care area into ethics territory? And when can we be comfortable saying, Well, I'm not an ethicist, but I know a little ethics.

Bob Macauley: 5:52

Yeah, I think that's a great question, too. So you know, Brian Carter, from University of Missouri, Kansas City, is one of the great leaders in this field of the overlap, or relationship between clinical ethics and palliative care, and he's written some wonderful things on this topic. And one of the areas he talks about is where they the two services can be complimentary when getting them both involved is helpful. And they have done studies where they've looked at patients who have received both ethics and palliative care consults. Which one came first, which one came second? In some of the studies, it's roughly equal, not always, but also, why is that? Why would you bring in the other service? I think that it might be easier for us as palliative care folks to understand why you would bring in palliative care after ethics, especially if there's a symptom management concerns or things like that, that ethics is clearly not going to do, but that we do when the question is, when do we as palliative care consultants also bring in ethics? There are a few things. One is, if there is a fracture of relationship, if I've had to go somewhere with the family and I feel like maybe we're having a hard time hearing each other, maybe a new voice would be helpful. That could be one situation another is significant distress, both on the part of the patient family, but also on providers and the system, like prolonged hospitalizations, where people start saying, is this a right use of resources as an institution? So that's beginning to be a broader ethical question. And the third one, I think, which complementarity can be really, really helpful, is, and I don't really have a whole lot of data on this, but I'm firmly convinced this is true, based on my own experience, for whatever that's worth, is situations where precedent and the individual come into conflict. So I think my theory is that ethicists care about precedent more than palliative care folks do. And I'm not saying that one side is right or wrong. I'm just saying that when I'm wearing my palliative care hat and I look at a patient, I worry about this patient, what's happening to them, what's happening to their family. I think ethicists do a really wonderful job of, in a way, coming up for air and saying, What does this mean for everybody else? Like, if we do this for this patient, what does that mean for the other patients, like this patient that may be impacted by this decision? I'll always remember that I was taken to task appropriately. So when I was at my last job, one of our roles with the ethics consult service was to help with difficult decisions in a variety of contexts, including ones related to utilization of scarce resources. And we had a patient come forward. He was an adult patient, and he was forced to travel couple of hours each way to get to his regional dialysis center to continue with dialysis for end stage renal disease. And he was a young father like I was. He had kids. He was going to die, probably much earlier in life than he should have, and he was burning precious time driving to a dialysis center. And he was like, number four on the wait list for the dialysis center nearby. And the question was, should we bump him to the top of the list? So the next slot that came open, we should give to him? And I found myself saying, yes, absolutely. And people were like, What about numbers one, two and three on that list? Bob? What about them? Maybe they have equally compelling stories. And I was like, Well, I know this guy's story. My heart's going out to him. I'm doing the classic empathizing thing, and I think they were right to take me to task for that. And that was one of the moments where I think I realized that I might be casting my a lot more with the palliative care folks than with the ethics folks. But were it not for the ethics folks and their sense of justice and precedent and fairness, I think we might have made what could have been an unfair decision to people who just didn't happen to be sitting right in front of us.

Daniel Eison: 9:50

You mentioned the distress of the teams and moral injury, and that's something that I want to at least come back to, if not talk about now, because I think that's one of the major. Sure things that both palliative care and ethics get asked about. What I also will highlight from what you just said, another thing that sticks out to me, and maybe there's a bit of a spoiler for your book, but the difference between ethics pursuing what is right and palliative care pursuing what feels right is a really important distinction. I think the heart coming into palliative care is something that seems really important.

Bob Macauley: 10:23

Yeah, I completely agree. I also think that it would probably be I know you weren't saying this, but it would probably be too crisp to say ethics, head, palliative care, heart, and I know you weren't saying that. I think some people do think that, though, and I don't think that's actually true, because ideally palliative care like we don't forget what's going on in our head. We just find our balance. And Sarah, earlier in the conversation, you talked about an ethics consultant coming in, talking about goals and hopes and things like that, I think ethicists are not just purely cerebral entities. They are heartfelt people who are trying to do the best job they can and to help people. So the question is, how do we bring each person's perspective and skill set and training to try to do the best we can, realizing that there's a lot of

Sarah Dabagh: 11:07

One thing I think of, and Dan, this is actually going back to your question a little bit ago. When people say I'm consulting palliative care, should I also consult bioethics? Where does that overlap for both services? I have this sort of very visual picture of just a distress bat signal that goes up and someone says something is distressing to me about this. I can't put it into words, help come and just de distress the situation. Either talk the family into something, or make this kid more comfortable or help me figure out how to feel about this, like there's this sense of help and distress that goes up.

Bob Macauley: 11:47

One of the things I was taught very early on in my career in bioethics and clinical ethics in particular was the importance of clarifying the question at the outset. So sometimes it's please help me. And one of the things that clinical ethicists do is they say, Well, how can I help? We're all in a helping profession. The question about clarifying what that question is is important, because I think that can give us some clues about which is the right service, or both services to involve. And in my little perfect world, which I often say I'm the only resident of, but it's really wonderful place to be, I'd invite people to join me there anytime they want, as long as they understand the rules. Is to say, wouldn't it be great if someone calls for help and we all got together and said, let's work through this together as to what exactly you're asking help with. And then how can we figure out who the right people are to help you with that? Because I think we've all experienced situations where some people can't articulate what they're asking for help with. So actually, there's a lot of work, and very beneficial work that goes into clarifying the question. It's not like they know the question. They're just choosing not to share it. They are just speaking from their heart. So the clarification of the question, I think, can be really, really helpful. Also, sometimes the question is not appropriate for one service or the other, or maybe either service. So classic thing in clinical ethics is a lot of things that seem ethical are really not ethical. Sometimes, when someone says, I'm going to call ethics, and really it's a failure of communication, that there's a piece of information that they don't possess, and if they had that information, it would clarify their concerns or assuage their concerns. Or maybe it's a relational issue, or maybe it's a medical management issue that doesn't have an ethical component, that's purely a clinical what's the right thing to do here? What has the best evidence, or things like that. So sometimes people ask a question that isn't truly ethical. At the same time, sometimes they're asking a question that they think is important, but in the conversation, you actually unearth the question that really is the most important question that hasn't been previously identified. And I think that that ideally will happen in the course of a larger conversation, assuming you have time and bandwidth in order to do that. So wouldn't it be great if somebody said, I'm I need help. I'm not sure who to call. Wouldn't it be great if everybody who they think about calling said, Well, why don't we all talk about this to figure out what the question is, who the right people are to help and the right people will continue down this road with you. And the people who aren't the right people now may turn out to be necessary later, but as long as the patient family are getting what they need, then we should all be happy with the plan that we come up with,

Daniel Eison: 14:33

As long as we're constructing our own fantasy worlds here, if we could have on the palliative care team an ethicist, the same way we all want to have a social worker, a nurse practitioner, a psychologist, a creative arts therapist, a child life specialist, and every other thing that we want. Would we ideally put an ethicist on the palliative care team?

Bob Macauley: 14:53

I love the way you're thinking, Dan like this is we're thinking really big picture and with optimism, and as long as the budget people don't catch wind of this conversation, I think we've got a great plan in mind. At one point, we had three of us who on the pediatric palliative care team, who all had advanced training in ethics, and so we arguably had more experience, certainly, and maybe even knowledge related to specifically, pediatric bioethics than an ethics consultant who largely dealt with adults and to state what, everyone in pediatric palliative care knows that our patient population is not only pediatrics, but it is skewed very early in pediatrics. So do adult principles? If you put it that way, from an ethical standpoint, do they translate okay to a 17 year old who technically is a minor, I would say most of the time, like in terms of, we can talk about decisional capacity, we can talk about some legal issues, but you it's a bit of a pivot, but not a huge one. But the younger you get, especially when you start talking about the neonatal period and perinatal and even prenatal situations, adult principles don't translate like it's all different. So if you have somebody coming in with an adult mindset of autonomy as the preeminent principle of everything, how does that translate into a neonate and in that context, especially in the NICU. So if there was ever a place that I would love to have an ethicist have a role on palliative care team, it would probably be in pediatrics, because that would give that ethicist the chance to become conversant and experienced in this aspect of health care that they have relatively little experience in, in most cases, because the vast majority of ethics consultation happened with adults.

Sarah Dabagh: 16:46

So how do you navigate that at OHSU, where you are a micro expert, but not the bioethicist, and interacting with the bioethics team about some of these kids who, let's say, are sitting on the end of the spectrum where adult principles may not apply as cleanly. How do you navigate that?

Bob Macauley: 17:05

It's complex, and I'm incredibly fortunate to have other members of both the pediatric palliative care team and the ethics consultation service who I don't think would disagree with anything I just said. So I think we're all in the same perspective of recognizing that adult ethics don't translate very well to very little kids, and acknowledging that the people on the pediatric palliative care team live in a world that the adult folks visit sometimes, and the way that we can work together with that is to share our perspectives and be willing to enlighten each other about areas that we hold expertise that the other person may not hold as much expertise. One of the great things about palliative care, and there's a it's very similar thing to spiritual care, which is obviously a component of palliative care, but one of the sayings that a chaplain friend of mine said that compared chaplains to physicians is, if a patient is stuck in a ditch, the physician's job is to get him out of the ditch. The chaplain's job is to jump in the ditch with them and hope that they can all get out. Now, you can critique that it doesn't exactly apply in every single case, but I think there's some some elegance there. And I think you could make a similar comparison, maybe to ethics and palliative care, like we're getting in the ditch where what's going on for you we're feeling what's going on. If we can have somebody who is a little bit more removed, doesn't mean they don't care, but is not necessarily in the nitty gritty with us, maybe they have a greater perspective, and they can see things that we can't see, because they're keeping their eye on a lot of different things, whereas we may be more focused on this patient in front of us.

Sarah Dabagh: 18:44

What advice would you give to our listeners who want to become more educated or more involved in bioethics?

Bob Macauley: 18:50

I think there are a few things. One is to recognize that I don't think we do the greatest job in training our fellows in ethical decision making. There's so much to cram into a one year fellowship, you can never cover it all. I tend to think that ethics may not play as much of a role in our educational process, broadly construed, for training the new members of our group, recognizing that may mean bolstering what we're doing with our trainees. There's a wonderful pediatric bioethics certificate out of UMKC that I highly recommend. There are also people out there who are bridging these two fields that I think are very generous with their time open up conversation between the ethics consult service and the palliative care service. So rather than just being two pagers that other people can call wouldn't it be great if we had a chance to get together and share our perspectives on tough cases or review articles and do a journal club together, or something along those lines, especially in academic centers. Can we work on academic projects together and publish together in order to build. Relationships and increase understanding. So I think there's a lot of proactive things that we could do if we identify that there's a challenge here, that there's complexity here. I think there are concrete steps we could take to bolster our own knowledge and also know where to go for additional perspectives, so that we don't have to just totally recreate everything and recreate the wheel for ourselves, but actually lean on the folks who are doing this work, even if they don't happen to be at our own institution.

Phoebe Winn: 20:30

Hi. My name is Phoebe Winn. I am a pediatric palliative care physician and currently a clinical ethics Fellow at Seattle Children's Hospital.

Sarah Dabagh: 20:39

So Phoebe, could you start by telling us a little bit about the bioethics fellowship, how you first got interested in it, and what made you feel like you needed to add it to your training and education.

Phoebe Winn: 20:49

I think I first sparked my interest in bioethics, actually as an undergraduate. So I think I was like fulfilling one of my liberal arts credits, and I remember being assigned a reading for that class by Peter Singer, who is a very controversial Australian ethicist. I sort of think of him as like the king of very incendiary utilitarianism. But I specifically remember reading a piece we read for that class in which he talks about sort of the ethical implications of what he terms the genetic supermarket, which is how he saw the future of prenatal screening and genetic selection using IVF and such, and what that might mean for society at large. But I think what got me was the conversation that it sparked in our classroom, and it was just a really open and engaging discussion in a way that I hadn't really experienced in like an academic setting before. A lot of people shy away from ethics, sort of because it's so challenging and has a lot of loud voices in it, like Peter Singer, but it begs us to ask questions that may not have answers or that are really hard. And I think that's hard, particularly for scientists who always want you know, evidence based data and clear cut answers. But I think experiencing that discourse and the perspective sharing that's a part of the process was a new experience for me, and to sort of be able to watch someone's mind being like, broadened or changed in real time was pretty cool to see. And then I just sort of became a junkie for asking difficult, it's impossible to answer questions, which made me really popular as an undergrad, as you can imagine, but I think it sort of got back burner as I slogged my way through medical training, but was always sort of simmering back there, and was fortunate to have people along my journey who also had similar interests in ethics and kept encouraging me and just sort of by chance, worked with someone at St Jude who had been in Seattle and reminded me about the fellowship and reached out, and things sort of all fell into place, but I'm really happy to have found my way back to it.

Sarah Dabagh: 22:55

I really love the description of bioethics as the asking of questions that don't necessarily have answers, are definitely not easy answers. You can imagine if there were easy answers, you wouldn't need bioethicists. You wouldn't need all of these discussions. But given your background and training as a palliative care doctor and then coming to work with bioethicists who may not necessarily be clinicians, originally, is there anything that surprised you about the way that they talk about patients? Look at patients or see some of these questions that may not have answers.

Phoebe Winn: 23:24

Yeah, I think it's one of the really cool things about ethics and that, you know, it's relatively new. And not until recently was there even sort of a standardized set of guidelines about what the training should look like. It's only like in the last 10 years or so that asbh sort of made their guidelines, and now they have an exam that you have to take. You know, what drew me to palliative care was really that interdisciplinary component. I think the ethics field has so many similarities to that and that there are, you know, I work with other ethics consultants who have a social work background or a spiritual care background, and I think that really provides sort of a unique way of thinking about things, and I think that similarity has been really amazing for me.

Daniel Eison: 24:07

So I'm curious, because we have talked before with other palliative care doctors about how they introduce themselves right when you walk into a room and you say, Hi, I'm with palliative care, or I'm with pact or bridges or stepping stones or what have you that always sets a tone. How do you introduce yourself as an ethicist? And do you ever run into resistance or skepticism or difficulty?

Phoebe Winn: 24:33

The short answer is yes, in many ways, well intentioned folks do a not perfect job of introducing our teams, both in the palliative care world and in the ethics world. And so in the same way that in the palliative care world, we're sometimes backtracking and assuring families that, you know, we don't have an agenda. We're not part of the death squad, whatever it is, we similarly are ensuring families in the ethics. X world, that it's not like you've called the cops, and that really our function is to act as sort of a neutral third party. The key difference that I feel is that while a palliative care team is being called to sort of get in the trenches and get involved with a family and help with symptom management and help sort of walk through that path longitudinally with them. The role of the ethics consultant is to sort of maintain neutrality. I mean, we gather information in relatively similar ways, but the purpose is to think about it from an outside perspective. And I think that's helpful for families to sort of reframe it in that, yes, I technically work for Seattle Children's Hospital, but my role is not to make any changes to the medical plan or put in any orders or just to sort of help think through something challenging that folks are having trouble with. The other space that comes up more in the ethics world, I found that in palliative care is that people who are placing the console maybe have not quite clear interpretations of what the role is. And so I guess this is sort of the aligning thing is, you know, when people place a palliative care consult with a goal of having us change the code status or whatever it might be, I think there's a similar let's call ethics and have them tell me what I'm doing is the right thing to do, or the wrong thing, whatever. And so that sort of prescribed agenda and sort of helping people to take a step back and understand what the role is so similar, but also some differences.

Daniel Eison: 26:34

I was going to say, I'm really jealous that you work somewhere where everyone understands what palliative care is and always consults you for the right reason, because I don't know what that's like, but I want to go back to something you were talking about, which is this neutrality. And I'm thinking about a conversation that we had with another guest on this episode, Bob McCauley, who does palliative care and ethics, and he was talking a little bit about the difficulty of being a neutral party, and how some people in the ethics world believe that palliative care physicians should not be ethicists, or physicians in general should not be ethicists, because maybe you lack a certain kind of neutrality just based on your role and your position. So I'm wondering if you could talk about that like, how do you find that neutrality? Do you find that your roles end up overlapping in interesting

Phoebe Winn: 27:19

When I first started doing ethics consults, I got really stressed out about this, because I felt like I was just doing palliative care, which meant that I was somehow doing ethics wrong. And you know, I'd listen to the consult and ask open ended questions and validate their concerns and use nurse statements. And you know, meeting with the families felt sort of similar, and trying to sort of evaluate where they are in their process. And I think I brought this up, actually, to Jen Kett, who's been a great mentor to me, and is also dual trained in ethics and palliative care. And she said, you know, Phoebe, you're just adding tools to your toolbox, and half the time I don't know which tool I'm using or what toolbox it came from, but if it feels appropriate, then you use it. Brian Carter, who's an amazing neonatologist, palliative care ethicist, also wrote a really great paper on this exact topic, about sort of when you should think about calling which service. And he talks a lot about this sort of neutrality piece, which I think is important, but he lays out a couple of questions that you can ask yourself in helping which team might be more helpful, and a lot of them clarify about sort of communication and what the question is pertaining to. And so I found myself asking myself those questions when I get an ethics consult, and trying to think about, okay, what are they asking me for, and what skills from either toolbox can I use to help answer that question?

Sarah Dabagh: 28:48

Do you think, though, in a perfect world, there would be a component of bioethics as a rotation or as an aspect of very direct training in a palliative care fellowship,

Phoebe Winn: 28:58

Acknowledging that I am entirely biased, I do think that spending some time with an ethics consult service, or at least having some, and I think most programs do incorporate some ethics into their didactics, at the very least, but there are definitely some sort of core principles that I didn't fully have a grasp on as A palliative care trainee that I feel like would have been really useful, mostly relating to issues that come up really frequently in pediatric palliative care. So information about the AAP guidelines for withdrawal of artificial nutrition and hydration, learning, sort of generally about the harm principle and the zone of Parental discretion adolescent decision making is another one that I think we sort of flounder at sometimes in the palliative care world, and there's actually a lot of really good evidence based writing about it in the ethics literature parental requests for non disclosure. Those are the ones that I think caused me and the teams I worked with a lot of distress. Us as a palliative care trainee, and spaces in which a lot of smart people have thought a lot about and written a lot about and just knowing that, even if you don't get a full grasp on them as a palliative care trainee, just knowing that you can look up that paper, look up the questions of the harm principle, and just remind yourself how to frame a tricky question is just, you know, like I said, more tools in the toolbox that can be used in either setting.

Sarah Dabagh: 30:24

I'm tempted to ask you for a bibliography or for a list of favorite papers and readings, and maybe we could even include that on our website. Yeah, for sure. So also expanding on something you mentioned, now that you are doing this training and working on this bibliography and making your way through all of these principles. Do you look back on cases you had as a palliative care physician differently?

Phoebe Winn: 30:47

It's hard for me to parse out whether it's ethics training itself or just sort of being exposed to more cases that are more complicated, but I think I do look back on sort of the cases that stick with me, from fellowship that were really challenging, and wish that I had thought to reach out to ethics colleagues, if for no other reason than getting that fresh set of eyes from a more neutral perspective, I think we get really deeply buried in and consumed by our palliative Care cases because we get so connected with families, and maybe this is just something I still need to work on professionally, but I think palliative care folks are so good at looking at things in the way that we're trained to do, and just sometimes, like moving where you're standing and looking through a different window with a different lens is really valuable. So I guess the ethics training has sort of served as a reminder to acknowledge when your investment in a case is really deep, which is so imperative to the work that we do as palliative care providers, but sort of understanding when that may be hindering your ability to think about the context of your patient in a larger picture. And I think the ethical perspective is a way to do that in some cases.

Daniel Eison: 32:01

I've noticed that oftentimes people start talking about ethics, thinking about ethics when they're going through moral distress, experiencing moral injury, and they're looking for ethics to come in and somehow address that. I'm just gonna leave that open. I kind of like wonder if you could talk about how you address that from your ethics perspective, from your palliative care perspective, from your combined perspective. What do you do for

Phoebe Winn: 32:23

Yeah, no, I'm really glad you brought this up, because I was going to try to bring it up myself in some way. I think there's kind of a hot debate out here about whose turf moral distress is. I've always experienced, you know, when there's distress that the palliative care team gets involved because A, we usually already are and B, we sort of have those natural, difficult communication skills that can help folks sort of reframe and work through a particularly challenging case. There are folks in the ethics world who feel like, unless there's a real ethical question, which I have moral distress is not a real question, that it shouldn't be an ethics consult, although I will say that we get consults all the time for moral distress, and we do engage and sort of help navigate these situations. I have found that broadening my ethics knowledge and understanding, and having some of that training under my belt has been really helpful in helping me mitigate moral distress with care team members, I've really seen people find it sort of healing to be validated in their distress and to sort of get some informal training and education about why a particular decision was made, given the precedent or the moral framework used to sort of think through things. And I think it can validate people to know that this is tricky for everyone, and a lot of people have spent time thinking and writing about these issues precisely because they're so hard. But sharing this with people in a meaningful way requires the palliative care communication skills that I'm glad I have just sort of reciting the harm principle is unlikely to be helpful for people. I have been pleasantly surprised about the collaborative nature of ethics, at least how it's done in Seattle. I sort of feel like ethicists are envisioned as these, like studious folks who sit up in a tall tower with books and they wear horn rimmed glasses and like decree the ethical law without anyone ever actually seeing them. And in my experience, there's, like very few cases where a consult is received and recommendations are provided without discussion with another member of our team, we have like, weekly meetings here to discuss cases, and we often will call for sort of ad hoc meetings of either the consultants or the entire ethics committee if there's a really difficult case, and often, you know, some friendly debate. And I think that can be very therapeutic for people to feel validated and how they're thinking about a case. And. Even if it's challenging, and just the mutual acknowledgement that a lot of times what we're doing is picking the least bad path forward from a lot of bad options.

Daniel Eison: 35:15

I have been editing this. The editing software is still up on my computer as we're talking so I have some, like, hot and fresh takes on ethics.

Sarah Dabagh: 35:25

My takes are sitting in a tupperware in the fridge, and you're wondering if you should throw them out or not. I have the opposite, like, potentially useful. You just, you know, gotta sniff them.

Daniel Eison: 35:35

Exactly. Do they? Do they pass the sniff test. Is this okay? Can I say this? I'll just jump in. I have this anecdote, and then you can probably spin off from there. I don't make a lot of points. It's just kind of a story.

Sarah Dabagh: 35:46

Do you want me to introduce your story?

Daniel Eison: 35:47

No, no, it's okay. I can do it. So Sarah, as you may be aware, I do pediatric palliative care, but as... I wish our audience could see the eye roll that I just got on the video, but... but as I don't think you or our audience are aware, my wife is a neonatologist and an ethicist, and she has actual formal training and an advanced degree in Medical Ethics, not things that I have. So our dinner table conversation gets pretty intense sometimes, and it's really useful to have each other's perspective, because we're both kind of amateur enthusiasts in the other's area of expertise, and our worlds overlap so much. The week that you and I were recording these interviews, I remember seeing her one day after work and saying, Hey, I feel like I have to apologize. I know I'm not an ethicist, but I was part of this ethics consult today, and I felt like such an imposter. And she replies, No, I'm the imposter. I was teaching medical students today about how to communicate serious communicate serious news, and that's like your whole thing. So it feels like, oh, Henry's "Gift of the Magi" or something. Because, of course, like neither of us actually holds it against the other one to be dabbling in the other's domain. But all of this is to say that hearing from both of our guests about, dare I say, the marriage between palliative care and ethics was actually really reassuring, both professionally and personally.

Sarah Dabagh: 37:06

So maybe that's our take home point: There are no clean separations in medical fields, and all of us are dabbling. I think this is really a call to explore, an opportunity to be interested. We do have a really excellent list of readings and resources that's going to be attached to this episode. I know we don't do that that often, but please do go to our website, pedipal.org, and read through them. They're really fantastic compliments to this episode and the discussion that we've had. But really, I think, like you said, I think this is an opportunity just to relax into the discomfort of not being an expert in everything and an opportunity for continued learning and growth.

Daniel Eison: 37:45

That was beautiful. I knew you would take what I said and make it mean something.

Sarah Dabagh: 37:52

We compliment each other, but I think you can take out some of the first part. I think I wandered my way into insight.

Daniel Eison: 37:58

Yeah, no. I mean, as we do, that can be the tagline for PediPal: Wandering our way into insight. 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. Great, lot of editing there, but

Sarah Dabagh: 38:32

I know, but you you just made it painful for yourself.

Daniel Eison: 38:35

Hey, that's like story of my life... Palliate me...