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One of the things I love about Liz Dzeng’s work is the way in which it draws upon, echoes, and advances our understanding of the influence of culture on the end of life experience.  This field is not new. In his book The Hour of our Death Philip Aries described a long evolution in western civilization of cultural attitudes towards dying.  More recently Sharon Kaufman ‘s book And a Time to Die described the ways in which physicians, nurses, hospital systems, and payment mechanisms influenced the hour and manner of patient’s deaths. Similarly Jessica Zitter, an intensivist and palliative care doctor analogized the inevitable clinical momentum toward highly aggressive intensive care in US hospitals as a conveyor belt.

Today Liz Dzeng discusses her journey towards studying this issue in detail. Having trained in different institutions within the United States and in the United Kingdom, and as both a sociologist and a hospitalist physician, Liz brings a unique perspective and set of skills to this issue. On this podcast we talk about her paper in JAMA Internal Medicine which studied three hospitals that varied in the intensity of care they provided to seriously ill patients. We discuss the moral distress that clinicians felt including, as one physician put it, a sense of your soul being ripped out. At the end we also pay tribute to Randy Curtis, senior author on this paper and mentor to Liz. Eric and I are joined today on this podcast by Anne Kelly palliative care social worker to discuss these issues with Liz.

-@alexsmithMD


Additional links:

From Liz: “policies that are too restrictive can actually have an opposite of hindering ethically and clinically appropriate practices whereas policies that allow for flexibility and transparency to act ethically can promote high quality end-of-life care” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8883558/

Other papers that are relevant: 

JAMA IM 2015: https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2212265

JPSM LAT France paper: https://www.jpsmjournal.com/article/S0885-3924(21)00399-7/pdf

ICM paper policies: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8883558/

JPSM aggressive care: https://www.jpsmjournal.com/article/S0885-3924(17)30425-6/fulltext

BMJ QS moral distress ethical climate: https://qualitysafety.bmj.com/content/27/10/766.long 

 


 

Eric: Welcome to the GeriPal podcast. This is Eric Widera.

Alex: This is Alex Smith.

Eric: And Alex, I see two people with us, one in the room with me also.

Alex: One in the room with you and one joining us by Zoom.

Eric: What’s going on in your background? That’s not your usual room too. You’ve got a piano there. Oh, I think we’re in for a treat.

Alex: We’ve got a lot to talk about. I’ll do introductions first. So Liz Dzeng is a sociologist and hospitalist, associate professor of medicine at UCSF, and she’s our guest today. Welcome, Liz.

Liz: Thanks. I’m really excited to be here.

Alex: And joining us as she has many times, Anne Kelly is a social worker at the San Francisco VA. Anne, welcome back.

Anne: Nice to be back. Thanks.

Eric: Alex is a little off his game because what happened to your arm, Alex?

Alex: I broke my hand. Yeah, broke my hand.

Eric: That’s his podcasting hand too. [laughter]

Alex: Right. So I’m not playing guitar. For those of you who are watching on YouTube, I’m going to play the piano. For those of you who are listening to the audio podcast, that’s probably most of you, my son, Kai, is going to play the guitar part on the song.

Eric: Wonderful. Liz, given that we’re talking about the song, do you have a song request for Alex?

Liz: I do, indeed. Proud Mary.

Eric: Why did you pick Proud Mary?

Liz: Well, some aspects of this paper around clinical momentum and things around defaults and that sort of thing. And so when I was thinking about the paper, writing it, conceptualizing it, I always kept thinking of whitewater rafting. We are on this raft and we just go down the river. We can’t stop ourselves. Sometimes I think about salmon swimming upstream in some of the things as well. And so wanted to go with the river theme, and I think this song encapsulates that a bit.

Eric: Great.

Alex: That’s great.

Eric: Alex hit it.

Alex: (singing) “Left a good job in the city. Working for the man every night and day, and I never lost one minute of sleep worrying about the way things might have been. Big wheels keep on turning. Proud Mary, keep on burning. Rolling, rolling, rolling on a river.”

Anne: Nice job, Alex.

Liz: Very impressive.

Anne: Not every day you see someone play the piano while wearing a cast on their hand.

Eric: Yeah, and for our listeners, excellent job, Kai. So Liz, let’s jump into the topic. So we’re going to have a link to the article that you published in JAMA IM titled The Hospital Culture and Intensity of End-of-Life Care at Three Academic Hospitals. But before we go into that particular article, how did you get interested in this as a topic around hospital culture or the variations that we see and why we have those variations?

Liz: Yeah, so I think a lot of this came from my own experiences. As many of us who are trainees in medicine, we go to different institutions throughout our training, medical school, residency, fellowship, wherever we end up for our careers. And so for me, I started off at one particular institution for medical school and went to another and noticed quite a few differences. And actually at that particular institution, I also became very interested in the interventions that we give near the end-of-life and in particular, life sustaining treatments near the end of life that might potentially be more harmful than beneficial.

Eric: What kind of differences did you see?

Liz: Well, I think it’s interesting because the ways that we actually as trainees and residents provide care near the end of life and the way that we communicate to patients are influenced by the way that we are trained in the hospital, what we see with different attendings. And I think when we’re in those environments, we actually don’t notice that that’s what we’re doing, that we are actually very much influenced by what’s around us. And it’s only when we go to a different institution that we’re like, “Oh, actually things are a bit different.” And then you get used to that. And so I was really interested in all of the studies that I’ve done and trying to understand, well, what are the differences between that? And I like to interview people who have been at those different institutions to get a sense of the different things that they’re seeing.

Eric: Yeah. So sorry for the interruption. Go on. So you were at these two different institutions, you noticed the difference?

Liz: Yeah, so actually what was also a big part of this are the ethical challenges that we encounter near the end-of-life. And so one of the things that I felt as a resident was moral distress around some of the treatments that we provide near the end-of-life. And I found that there were a lot of different things that constrained my ability to do what I thought was in the best interest of the patient. So I trained in New York and there was oftentimes a lot of invocation of policies and laws that were like, “Oh, well we can’t do this because we have to do this law or that law.” But then I also felt like nobody really knew what the policies and laws were and people were just generally talking about these policies and laws that constrained them. And I found that to be both very interesting ethically but also very morally distressing.

And so I sometimes joke that I did four years of a PhD to get through self therapy of trying to understand this intellectually and ethically. And so when I did my PhD, I actually interviewed at many different institutions in the United States. And when I was trying to understand why do we do these sorts of things, it was so interesting to go back to where I did my medical school, interview people there, interview at a different institution in the US and see how different they were and actually how it wasn’t actually just necessarily the policies or the laws that were changing the way that we were practicing, but also who we were around, basically the hospital culture, which was something that I just started getting more interested in the more I looked into it.

Eric: Yeah, I actually trained in New York too, and it was a three hospital system, so we had a county hospital, we had an academic hospital and VA hospital all in the same state. I guess the VA is federal though. And it was amazing just seeing the differences in how end-of-life care is managed at those three institutions, which were all a subway right away from each other.

Liz: Right. Yeah. And actually what was also really interesting was that… So I did my PhD in Cambridge in the United Kingdom, and one of the hospitals that I looked at in my PhD was, well, a hospital in the UK, which was an NHS hospital. And so my initial assumption when I first started this project was, well, obviously the NHS hospital is going to be so different from the US hospitals and it’s going to be two different groupings. And I think one of the most aha moments I had was when I went to the last hospital, I was like, “Oh my God, this hospital is actually more like the UK hospital than the other two US hospitals.”

And so that started making me think, actually, it’s not just about national differences in cultures. We need to think about institutional cultures, local cultures, how are all the different things that are going on in each of the different states, cities, the institution itself, the people in the institution, even differences within units, specialties, those are all different microcultures that occur in the larger hospital culture, which then are within the larger national culture that all interact with each other.

Eric: Yeah, I even noticed that on our palliative care service, the teams change constantly. Med team one will be a very different med team one in two weeks than it is now and the difference between that and the surgical teams and everything else. So there’s this constant kind of churn on even what the culture looks like in any particular half a month. Do you notice that too, Anne?

Anne: Absolutely. And the culture can extend to how people are thinking about care planning, but also how are we talking to each other and collaborating between teams. There’s so many layers to the ways in which those cultural changes can impact day-to-day care planning and collaboration.

Liz: Yeah, exactly. And I think the multidisciplinary team is a really important part of that. That’s actually something that I touch upon in this paper that we’re talking about right now. It’s the clinicians on the rounding team, yes, but also the multidisciplinary team is really important, how they support the patient, the family, the doctors, the nurses, but also how the broader institutional structures such as ethics committees, et cetera, how they support. So it’s all these different people that are influencing.

Eric: Well, let’s dive into that. So before we talk about the results, can you give us a very brief overview of what you did in this article?

Liz: Yeah. So I did a pretty large scale ethnography, ethnographic interviewing of three hospitals in the United States, three in the West Coast, two in California, and one in Washington state. And what my goal was was to try to get a 360 degree view of the healthcare system by interviewing as many different types of people that will influence care for people who are at the end-of-life or people with serious illness in the hospital. And so it’s not just about interviewing the people who are interacting with the patient directly, clinicians, social workers, nurses, doctors, but also people who are institutional players, so people who are in administration, risk managers, patient experience officers, ethics committee people, outpatient geriatricians, and then also thinking about the leadership of the hospital.

And so trying to understand what the broader culture of the hospital is by fitting together all the different pieces. No one person is going to have the answer of like, “Well, this is what the hospital culture is like.” But if you interview enough people, and I interviewed about 40 people at each of the three sites, you can start getting a sense of what the hospital culture looks like and what are the different influences on that culture.

Alex: And how did you select these three hospitals?

Liz: Yeah, so the Dartmouth Atlas is this really wonderful compendium of data of hospitals around the country. And I was interested in intensity of end-of-life care and differences in intensity of end-of-life care. And so I specifically chose hospitals that were at different intensities of care based on the Dartmouth Atlas around serious illness and end-of-life care. So looking at metrics such as percentage of people who died in the ICU spending near the end-of-life and took those metrics and broadly tried to choose hospitals that were in the lower, middle and upper part of the spectrum.

Alex: Did you have to try a number of hospitals before you found some that would agree or were they fairly open to you doing this work?

Liz: Yeah, actually site selection was interesting. So there were many different factors that also went into it. Obviously there’s also a lot of variation in terms of different types of hospitals, even within the same intensity of care. There’s obviously private hospitals, academic hospitals, community hospitals. So I just did decide to choose to focus on academic medical centers just to start somewhere. And then was trying to find different hospitals. I did actually have a few other hospital sites in the state of California that didn’t work out as well as these. Also, the COVID-19 pandemic did hit right in the middle of data collection, so that also made things challenging. And so one of the sites, unfortunately, didn’t work out because everyone was then recruited to help with the pandemic. And so I think that’s just the nature of research though.

Eric: Okay. So you go into these three hospitals, you interview about 40 people each. How long does that take by the way? How long were you at these three sites for?

Liz: Well, I am always a little embarrassed by the dates of the study because it’s a very long period of time. It took several years, and again, the pandemic did… When the pandemic hit, I was actually down in one of the sites to try to do interviews and then everything was falling apart. I was like, “Okay, I think I better go back.” So it did take a little bit longer and then everything switched over to video. So I think all in all, it actually took about two to four years, maybe, to finish up all the interviews.

And I think also as we started doing more analysis, we started being like, “Oh, I think we actually need to interview these people and these people.” That’s the process of qualitative research. There’s a process between data collection and data analysis where you go back and forth as the data evolves. And so as we started coming up with more hypotheses and themes and theories of how things worked, we would actually go back and start interviewing more people. And so I think there was a point when I thought data analysis had finished, and then I was like, “Well, I think I need more.” So we kept going.

Eric: And what’s the headline? If there was a headline for this article, what would it be?

Liz: So I think that the headline would be that policies, practices, protocols and resources of a hospital, what hospitals invest in influences hospital cultures, and that influences the way that we practice medicine broadly, but specifically for this paper, how we practice medicine at the end-of-life for patients who are near the end-of-life and how that influences intensity of end of life care. Sorry, that was not as concise as I wanted.

Anne: And when you say invest in, what do you mean by that?

Liz: Yeah, I think a lot of the different things that I mentioned, resources, policies, practices, those are all decisions that hospitals make, that leaders make in hospitals. And so that is what I mean by investment. What are hospitals saying, “These are priorities that we want to invest in to support doctors, or this is the direction that we want to go to support doctors?” And I think oftentimes they align with hospital culture, values, ethics, and that sort of thing. So actually, I think the interaction between the policies and structures, et cetera, that a hospital has influences the culture, which then influences the policies.

Eric: When I thought about the big headline too, it seems like one big theme was, going back to the song, there is this river flowing and to divert that river requires a lot of effort. And every hospital that you interviewed, there was this thinking that the default was more high intensity treatment. It requires effort to shift from the default. Is that right?

Liz: You summarized the paper much better than I did.

Eric: I just looked at your abstract for that one.

Liz: I should have just read the key points from my paper. I tried to prepare that one. So yes, there is a default of high intensity care in American medicine, and that is something that the paper showed, but that’s also something that many other papers and data in the US has also shown. If I were to summarize this better, it’s that there’s institutional structures that either thwart or facilitate a physician’s ability to go against that default of high intensity care.

Eric: Yeah, and it sounds like, so again, for diverting from that high intensity care, diverting from the river, it requires some type of intervention, but there would be potentially multiple different ways that we get back into the flow of high intensity care, whether that be, again, consultants, policies, somebody else, leadership putting up a barrier to deescalation. Is that right too?

Liz: Yeah. So that’s what I mean by factors that thwart or either encourage a default of high intensity care. So what came up in a lot of the interviews was that I think generally clinicians don’t want to be giving high intensity care that’s not going to help people near the end-of-life. There’s a lot of moral distress around that, and yet that still happens. Why does that happen? And so there are instances where people talk about how they tried to do it and then they got halfway through or they spent weeks doing it, and then something thwarted it, as you said, like leadership, ethics, risk management, something. And so they’re like, “Oh, oh my goodness.” And then so the-

Eric: And the next time that happens, it makes them not want to pursue deescalation as much anymore because they’ve had this traumatic experience happen. And what’s the point of going through all of this? Is that right too?

Liz: Right, exactly. Yeah, that’s the one important part of it are extreme cases as we call it. And so yeah, if you’ve spent weeks trying to work with somebody to deescalate and then you go off service and then they’re suddenly tricked and pegged and then you’re like, “Well, what was the point of all of that work?” And I think there was one really memorable quote was like it takes away a piece of your soul and you decide you’d never want to do it again, try to deescalate or try to really work hard to try to do what you think is ethically correct. And so I think what the main point of the paper is is that actually the confluence of all of these different factors of thwarting or encouraging of deescalation creates an equilibrium at each of these institutions. And so the combination of the institutional structures, as well as the extreme cases that each individual doctor feels will actually help create this different culture, be it high or low intensity.

Alex: I found your quotes particularly hard hitting here. For example, here’s a quote from somebody at a high intensity hospital, “There’s a culture from the top of the healthcare system down. We are going to 11 on every situation, appropriate or not. It’s not explainable that each individual physician has independently arrived at this very aggressive practice pattern. I think it’s the institution wants to be so aggressive and that so just steeps everyone in doing that kind of stuff.”

Liz: Yeah, and I think that really illustrates… There was a lot of moral distress in a lot of these quotes, and it was very hard to listen to a lot of these things. People don’t want to be doing care that’s not helpful for patients near the end of life, and yet they feel like the institution is doing it. And oftentimes people would respond, “Oh, it’s the institution. They’re making me do it.” I’m like, “Well, who’s the institution?” They’re like, “I don’t know.”

Anne: Did you find that when you were having these interviews that people felt like the questions you were asking them or this topic at hand was something that they had spent time reflecting on for themselves and felt ready to talk about? Or did it feel like, sometimes the wallpaper in the room, you don’t have the words to describe it because you’re so used to seeing it, and so did you feel like people were really ready and able to talk about it? Or did you find that it felt there were so many invisible structures that it took some time for them to find the words to describe it?

Liz: I feel like everyone was very eager to talk about the phenomenon. I think that this is something that has been on their mind, at least providing care that may not be beneficial near the end-of-life, that it has created conflicts. Those are the cases that people remember, the challenges, the moral distress. And so people are eager to talk about examples. They had lots of examples. They were emotive in the interviews. However, when asked about, well, why might that be the case? For example, as I was saying, oh, it’s the institution and everyone has theories and ideas. And actually, it’s interesting, I think a couple of my interviews actually prompted debate outside of the interviews. Some people thought it was one thing and other people thought it was another thing. So I think there’s many different theories as to why that might be the case. And of course, this is all multifactorial too.

Eric: Well, it’s interesting because one barrier that came up, it sounds like, were ethics committees, I’m guessing barrier and facilitator depending on which institution you’re at, which also rings true in having been in multiple different institutions. What ethics committee looks like, how it operates, how it makes recommendations, varies a lot. But I’m guessing that while teams may blame institution ethics committees, I wonder if ethics committees blamed other things. Did you notice that there was competing complaints about why we end up in this high intensity default until death pathway?

Liz: Well, I think it’s interesting. Yeah. there is a little bit of what you mentioned around, oh, well, this entity thwarted or this entity made it not possible for me to deescalate. Yes, that also happened. I think another interesting thing is that people will be like, “Oh, well, it’s the patients that are asking for these things or it’s this other thing. It’s never ourselves,” which is interesting. And I think actually that was something that was really illuminating to me during my PhD studies where I was like, “Wow, actually the words that I say as a doctor has a huge influence on obviously framing and everything.” And so I think that there’s oftentimes a way to be like, “Oh, well. I tried to do all this stuff-”

Eric: I’m just this little pawn in this system.

Liz: Yeah, exactly. And in some ways what I’m saying in the paper is that yes, you are like a little pawn in the system, but there are ways that, I think, as people who make up the system, the system is comprised of people that we can maybe do things to try to improve the situation, maybe not as an attending on a clinical service, but maybe on a broader level.

Eric: Even in chess, pawns are really important to winning the game.

Alex: Liz, could you give a specific example of a policy, a hospital policy, that puts people on a pathway towards highly aggressive, highly intensive care?

Liz: I was saying in the beginning that hospital policy, one of the first questions that I would ask, I would ask them, “What are the policies that you have for ICU admission?” And people actually wouldn’t necessarily have a sense of exactly what the policy is. How many of us actually know what the policies are of our institution? In fact, I tried to find UCSF’s policy and it took a really long time to try to find it, and it was very difficult. And so I would actually say that it’s not necessarily policies that influence the way that we do things, but perceptions of what our policies are, what we think the policies are, the culture of how things are done. And so I asked a lot about ICU admission criteria, and I think that…

So if I might also put another example in when one of the biggest questions I have between the US and the UK is in the US, I talk to people, I talk to clinicians, and I’m like, “Well, is it ethical to admit a patient who may have a terminal disease and may not necessarily benefit from ICU admission?” And they’re like, “Well, it would be unethical not to talk to the family.” Whereas in the UK, you ask the same question. They’re like, “It would be unethical to subject a patient to ICU level treatment when it’s not going to benefit them.” And so I actually think that it’s the way that we think about these questions, the ethics that are behind the way that we think about ICU level policies because in our interviews, we actually talk about actual policies and then the way we think about policies.

Anne: It’s like the underlying values and how we are prioritizing them. And I noticed throughout some of the quotes, one of the feelings that I came away with when I was reading the quotes in your paper is some degree of feeling fearful, fearful of getting in trouble if we don’t do the right thing, fearful of repercussions either from higher ups or patients and families if we don’t… So acting to avoid consequence, we’re going through the motions. I don’t know if that’s something that struck you too.

Liz: Yeah. And again, this kind of goes into, well, what is officially the truth and what are we feeling? And so that’s why in the work that I do, I think a lot about how people think about things, our perceptions of the world around us, which then influence our actions. It’s not necessarily what actually is the truth. So yeah, people are really fearful of litigation. Litigation comes up a lot, but then I asked, “Well, how many lawsuits have you actually been aware of?” Obviously they do happen, but they don’t happen as often as we are afraid of them happening. I think it constrains us quite a bit.

And so I think that actually that’s where I think… One of the respondents that I talked to was in risk management. And I think people can be very afraid of being sued whether or not that is a true threat or not, but the way that a hospital supports clinicians to make ethical decisions saying like, “Oh yes, we are very afraid of being sued, so let’s make sure we don’t do anything worrisome that could potentially hurt the hospital or whatever.” Or, “You do the right ethical thing and we will support you in what you think is ethically correct.” Those are two different ways that you can support around that particular fear.

Anne: Yeah.

Eric: It’s also fascinating, I was just reading, it was a Health Affairs article that came out not too long ago looking at geographic variation in costs of care at the end-of-life. And then what they found is availability of services and physician’s beliefs, but not patient’s beliefs were important in explaining geographic variations in end-of-life spending. So again, maybe the preferences and beliefs of our patients are not the main driver of variation. It’s our own beliefs as physicians, as healthcare providers, what I’m reading here, the culture of the healthcare teams, the hospital and availability of services.

In this article, it was availability of hospice services, but we also know availability of ICU services. The more ICU beds, more likely you’re going to be admitted to the ICU varies a lot. So I wonder how much of this is we’re putting the blame on the patients for high intensity care and family members, when in truth, there’s a lot more going on there, including, like you said earlier, even the words that we use to talk to patients influences patients’ decisions. And maybe that’s the role of palliative care here is now you have a team that’s trained on how to communicate with patients about serious illness and that may change the trajectory of care.

Alex: Yeah. I’m interested in what you found about the role of palliative care teams at these hospitals.

Liz: Yeah, palliative care teams is exactly one of those institutional factors. Well, it’s not an institutional factor, but institutions can either support having more palliative care teams, better palliative care resources, being palliative care friendly or being less so. And palliative care friendliness was definitely a very important factor to this. The low intensity hospital, the medium intensity hospital had very strong cultures of palliative care. And I think this is where you get into the limitations of the paper, how strong is this and how much does that influence this? I think that’s actually a really interesting thing for future exploration. Leadership in palliative care, I think, is really important as well. And I think that beyond how much is palliative care supported to create a palliative care friendly environment, but also how much is palliative care integrated into the hospital culture? How much are trainees being exposed to doing palliative care conversations?

So actually one thing that I also noticed between some of the institutions I’ve been at, one hospital that I was at, palliative care would come in and see the patient and do their thing and write their note and that sort of thing, and that would be it. And then so people would be like, “Oh yeah, we need to call palliative care.” And then they’d defer to palliative care. Whereas at another institution that I was exposed to, they would actually have palliative care almost mentoring trainees into how to have these conversations and help with debriefing and that sort of thing. And that, I think, really actually helped change the culture to make it be like, “Okay, this is actually my responsibility for my patient and palliative care is going to help support me do that versus I’m outsourcing.”

Eric: Was the latter example the low intensity?

Liz: Yes, the latter one was a low intensity, and the former was a high intensity hospital.

Eric: High intensity. So again, changing the culture. Anne, you were going to say something.

Anne: When I listened to you, Liz, I think just going back to what we talked about at the top of this episode, how, I think, Eric and Alex, we see that variation even within our own hospital. The culture, depending on what teams are involved, the complexity of the patient care, whether we sometimes work with teams who want us to be co-facilitating every meeting with patient and family and others who say, “You go have the conversation, let us know how it goes.” And everything-

Eric: I’m guessing it also varies on who the attending is on service for the palliative care service.

Anne: And it can be affected by how intensely emotional or challenging it has been to provide care in a different… I think it can be influenced by a lot of things, but I think even in our institution, we can see the variations of that and how much effort it can take to really figure out how to collaborate and work well together in the best interest of the patient.

Eric: One question that comes up with any qualitative study, this is Liz and your team analyzing this stuff, does this have face validity to you? When you read this, does it seem like, oh yeah, in my own experience, this seems right?

Liz: So I’d be curious what you guys think of about that face validity, but in qualitative research, one of the things that we try to help improve that, I guess, that face validity is we triangulate. We go to different ways of looking at the question and try to see if this is consistent across different types of data, but also member checking is an important part of this as well. So going back to people who are similar to the people interviewed or to the actual people interviewed being like, “How does this look to you? Does that sound about right?” And I feel like when I’ve had the opportunity to share this data with people, people have felt like this does ring true with their experiences.

Eric: And Alex, does this ring true to your experiences?

Alex: For me, I’ll just name an institution here. When Eric and I were doing those… Well, many people were doing these telepalliative care consults in New York at Columbia Presbyterian Hospital remotely during COVID. We were shocked to find that if we wanted to change a patient’s code status to DNR, we had to call a hospital administrator to get approval to do so. And that had never happened at any hospital where I have trained previously.

Eric: I trained in New York and that didn’t happen.

Alex: Right. You were at a different institution in New York. And one way of thinking about it is this is an important step, a critical step, and it’s helpful to have many eyes look at it. Much in the same way, it’s always good to have two people check over your opioid conversion, and it’s helpful to have two people to look over your decision to change somebody’s code status to DNR. The other way to look at it is this is a check, a roadblock, a barrier to seamless alignment of care with patients’ goals and values, or even more nefariously, it’s like big brother looking over you. So to me, this rung true, I think it also rung true, the moral distress that you hear from these quotes, which just comes through, I think it takes away a piece of your soul. You feel horrible about it because you’re not accomplishing anything good in the long run, and that also rings true.

That said, I would say that there are a number of instances in which trainees, people who are relatively junior who haven’t seen people recover from near death, have a nihilism about what will happen to their patients. And that there are times in which there is a chance, and I worry a little bit about invoking futility too often in these sorts of circumstances, and that there are very strong reasons to align with patient and families wishes, even in circumstances in which the likelihood of highly aggressive, highly intensive care providing the outcome that patients and families desire are low, extremely low, but maybe not zero, right? So I see both sides and I feel that tension here.

Liz: Yeah, and I think it’s a real tension. It’s why this is difficult. These are ethical challenges, and you’re right, people do recover from these, and trainees in particular have less experience having seen people make it to the other side. I think one of the things that I really also focused on in the paper was the relational aspect of things. So the ways that some of the hospitals actually encouraged that relational thinking, those relational ethical conversations and principles, more so than some of the other hospitals. And so that also I think helped alleviate some of the moral distress. But it also wasn’t just about like, “Oh, we make decisions quickly or slowly.” It’s about what’s the therapeutic alliance that you’re creating with the patients and their families. But earlier on, you were talking about policy, which reminded me-

Eric: Can I also just highlight because I think this is a really important part, is this emotional thing. I highlight two quotes, High intensity hospital as far as relational and emotional aspects to end-of-life care, “I think it takes away a piece of your soul. You feel horrible because you’re not accomplishing anything good in the long run, which is why I think a lot of physicians don’t call ethics. They don’t even fight the battle. Why fight the battle? Just do your shift and move on.

Low intensity hospital, “I really value ending the situation on the same team as the family and the patient. I’ve got to align with this family. That’s my number one priority. If I’m at odds with the patient or family and they feel like they’re not getting the care that they want, I feel like that’s a much bigger loss in my mind than someone getting CPR when they’re 85 years old. It’s just for a sadder, to me, when they say those doctors didn’t care or they didn’t save my mom.” So it’s interesting. The emotional toll for the high intensity hospital is the intervention. I think from the low intensity hospital, it seemed more like the process and the outcome, which in this case was not just the worry about the suffering of the patient doing something like CPR, but the suffering of the family members and what they’re going to come out of this.

Liz: Exactly. And one reductionist way to think about it is like, oh, okay, well, we stop treatments that may be perceived to be “futile,” and that takes less time. But actually with the lower intensity institutions, they recognize actually this takes a lot of time. We’re not changing the amount of time that maybe is occurring, but it’s more we’re using that time in a way that forges a connection and lowers the distress on both sides.

Eric: And I feel that also rings true in real life is when teams are going in there with a desired outcome. We need to make this patient DNR. That often doesn’t work out very well versus if you let go of the outcome, the desired outcome that you have, except for let’s make sure that our interventions are aligning with what’s important to the patient. And for me at least, that relieves a lot of my emotional distress over doing something like CPR in somebody with advanced cancer is if I feel like, oh, we’ve had this conversation, this is what’s important to them, this is why we’re doing it.

Anne: And I think so much of what we’re saying rings true to me to the idea of the times in which providing care or coordinating care feels really complicated is often a time when there’s gaps in really strong, good communication across disciplines, across teams when there’s a lot of hands on deck, but maybe we’re not all working with the same information. And just to say it takes so much time and effort to communicate really well to be able to get everybody on the same page and get a ship to go in the same direction that feels aligned with the patient’s values and to skip that or to minimize that process is going to result in a lot of, I think, difficult feelings, difficult emotions, and an outcome that feels questionable. Did we really do right by this person as an individual?

Alex: There’s a quote that illustrates exactly that from the high intensity hospital, “The family would not get let go. She was dying from months, had no other treatment options. Our attending said she’s no longer a candidate for this kind of treatment, so she decompensates to not offer the treatment. We stood in front of the room for hours and every doctor that came in, I said, we’re not offering this treatment.” But then the specialist that came in and said, oh yeah, we can give that treatment.” And then of course the patient got the treatment ended up in the ICU, got CPR, and it was just very distressing for this respondent.

Liz: Yeah, that interview was very intense to be a part of. I think that had happened months later, and yet there was still so much distress around that situation. And I think that this actually points to ways that we can have policies or protocols that help improve this. So I think your point about everyone being on the same page is incredibly important. And one of the other papers that I actually worked on with Randy Curtis, my late mentor who he spent a sabbatical year in Paris, and we did a study in Paris around the ways that they actually had a protocolized process for having interdisciplinary teams come together and discuss these questions every day, that that really helped improve some of these decisions and the ethics of some of these decisions after that protocolized process was legislated into French law.

Eric: Okay. Liz, I know we’re running out of time. I got one last question for you is that let’s say I work in a high intensity hospital and I want to be in a low intensity hospital or change the culture to low intensity hospital. One or two things that I could do to make that happen potentially from the work that you’ve learned from this article.

Liz: So I think that’s a really hard question, and I’ve been really trying to-

Eric: That’s why I saved it for last. [laughter]

Liz: I’ve been thinking about this a lot. I think culture change is so difficult, and I guess having done this more exploratory work, my next question is, well, how do I actually change this? Are there interventions that I can come up with to change this? And I’ve been thinking, “Well, first of all, I think that it is very hospital dependent.” You can’t have a one size fits all intervention that works for every hospital in the nation. I think we really need to understand what strengths and weaknesses are in different hospitals. You have to think about the dynamics of leadership, what their incentives are, what the people in the institution are like, and that sort of thing. And so having an understanding of a hospital’s ethical climate, for example, having an understanding of how good do teams work together in multidisciplinary communication and respect for different types of people in the hospital team.

All those sorts of things I think need to be taken into account. And I think that any intervention that is attempting to change culture needs to be a multi-pronged intervention that acts at many different levels of the healthcare system. So not just the team or the palliative care service, but it really needs to be multi-pronged and multi-level across the institution. I know that there’s many different people around the country that are trying to think of culture change, particularly around end-of-life care and palliative care. And I think this is something that I’m continuing to think about and excited to work with other people who are thinking about this as well because it’s very complicated and challenging.

Alex: We’re running out of time. I wanted to make sure that if there’s something you wanted to say about the late great Randy Curtis, you had an opportunity.

Liz: Oh, yeah. So Randy was one of my most beloved mentors, and I miss him dearly. He’s been so influential in all of this. I actually was reflecting for this podcast. I was introduced to Randy about 10 years ago. He helped facilitate my PhD studies at his institution. And from there, I think what was most amazing about him was just his curiosity around this and his willingness to support me as a mentee in whatever I wanted to do. This wasn’t his main area, and yet he sponsored me so much. He was like, “Hey, come on over to France. This is really cool. Let’s learn about institutional cultures there and this law that was just implemented, the Leonetti law.”

And then just really helping to sponsor my ability to do this research at different places and just his excitement about all these different ideas. And he’s such a loss to the palliative care community. This paper was actually the last thing that… Our last email exchange was around this paper. The last thing he did was sign the authorship forms for this paper. So to me, it’s really amazing. I’m so glad that it was accepted before he passed away. And this paper means so much to me because of what it meant about my relationship with Randy.

Eric: It’s amazing how many people Randy touched.

Alex: We miss him too.

Eric: And with that, Alex, do you want to end us with a little bit more Proud Mary?

Alex: Yeah, and I’ll just say that this is tremendous work, Liz, and it documents what we’ve talked about with Jessica Zitter on this podcast, this idea being on the conveyor belt of high intensity care, and what the late great Sharon Kaufman documented in And a Time to Die about how hospital culture shapes decision-making in the end-of-life. And even going back to Philippe Aries in The Hour of Our Death and the way that culture has throughout history shaped our notions of the end of life.

Here’s a little bit more of Proud Mary.

(singing) “If you come down to the river, bet you’re going find some people who live. You don’t have to worry because we have no money. People on the river are happy to give. Big wheel keep on turning. Proud Mary keep on burning. Rolling, rolling, rolling on river.”

Eric: That was fabulous. Anybody watching the YouTube video, you can see Alex’s left index finger is doing a lot of work there. That’s his only finger he could use.

Anne: I was glad we got to see an action shot of that.

Eric: Liz, Anne, thanks for joining us on the GeriPal podcast. Always a pleasure.

Liz: Thank you so much. This is such an honor to be able to talk to you guys about this paper.

Eric: And all of our listeners, thank you for your support.

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