Vicki Jackson on Building the Evidence Base for Palliative Care

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

Alex: This is Alex Smith.

Eric: And we have a guest with us today, Jessica Zitter. Jessica is a Pulmonary Critical care doctor, a Palliative Medicine doctor, a feature in a recent Academy Award nominated film, Extremis, that you can find on Netflix, and also now an author of a new book called Extreme Measures. Welcome Jessica.

Jessica: Thank you so much for having me.

Alex: So I thought we’d start off, given the seriousness of the topic of Pulmonary Critical Care, and the weighty tone of the movie with something sunny, because it’s Aloha Friday! I forgot my Hawaiian shirt, but usually on Friday we all wear Aloha shirts, so in honor of that maybe a little Somewhere Over the Rainbow. Jessica are you going to join me a little here?

Jessica: A little bit.

Alex: All right. Got the ukulele too …

Alex and Jessica sing “Somewhere Over the Rainbow” by  Israel Kamakawiwoʻole.

Alex:

Nice, I think that’s the first time we’ve had a guest join for singing on the GeriPal Podcast.

Eric: I believe so.

Jessica: That’s gorgeous, thank you. Your voice is really much more beautiful than mine, thank you.

Alex: No, no, no. That was beautiful. Welcome to GeriPal Podcast. It’s an honor to have you with us today. I really enjoyed reading your book and seeing the movie. Such deep material, there’s so much we could talk about today. I thought it would be interesting to start off by talking about what motivated you to write the book, in particular. Why a book? How did that happen?

Jessica: It didn’t happen … It didn’t start out intentionally as a book. It started out as a series of personal journal articles. Journal writing that I was writing in my early days as an ICU doctor, and even my residency in medical school when I was, really looking back, suffering from some moral distress. It was a way of processing what I was seeing and sharing it with my family and friends. And as I found the Palliative Car movement, it became a much more hopeful series of essays and eventually that turned into a book proposal.

Alex: I was struck in this book by how much there’s a sense that as you learned and developed, and became interested, and trained, and worked in Palliative medicine, that you had to unlearn so much of what you have learned in Pulmonary Critical Care. Not just in terms of the technical stuff, but in terms of the culture of critical care. I wonder if you could comment on that a little bit.

Jessica: I’m still unlearning and I’m still learning, and I expect that to be the case forever, I hope. We go in and especially in moments of, in environments, like the ICU where there’s so much distress and so much extremis and physiologic distress and suffering. It’s really comforting to fall back on protocols. It’s something that I just did automatically and I didn’t really know another way. It was when I learned from a nurse, Pat Murphy, who I write about in the book, who taught me really how to be the doctor that I aspired to be now.

I learned how to do it a different way and come out of the protocols and take pauses, that I started to feel some relief. But it was hard. It’s still hard.

Alex: Yeah, Pulmonary Critical Care and Palliative medicine are one of those, just almost … I don’t want to say combustible, but there’s something about the cultures of the two that are seemingly in some ways at odds. So, it’s just remarkable to read your story as you’ve gone through the journey of being well trained and accomplished in both.

Eric: What I thought was fascinating is that you mentioned that you’re treated differently as a Pulminologist and Critical Care doctor when you do consults. Where your word is, you said, like “God” versus when you’re a Palliative Care doctor, sounds like, your word isn’t always like “God.”

Jessica: Actually, before I answer that. I’m curious to hear what you thought about when you read that as Geriatricians and Palliative Care physicians. What’s your response to that?

Eric: Well, my response is that, I feel like our word is never like “God”, it’s always a negotiation. I never thought about the differences in consult culture, and how people respond differently to different consultants before I read that.

Alex: Yeah, Pulmonary Critical Care is so hierarchical. The structure of … Right? As you write about it in the book, and Palliative medicine is so interdisciplinary. Each team member is valued in its own way.

Jessica: Yeah, it’s really fascinating to me. I actually wrote a piece a while ago called “Collegial Burnout.” It was about the burnout that I think is unique to Palliative Care physicians, maybe other types of physicians too, but certainly something that I had come upon later in my career in trying to navigate my way through as a Palliative Care consultant. It’s not the kind of burnout that we talk about with “Oh, you know, so many patients are dying and there’s so much suffering.” It’s not that burnout, which of course is a real burnout as well. This is a different kind of burnout, and it’s the burnout of feeling like you’re constantly walking on egg shells.

And like you really don’t want to … You want to adhere to this consultation etiquette. There’s consultation etiquette for every consultant, but when you’re a Palliative Care physician with this relatively new sub–specialty of medicine and also perceived by many as, touchy–feely, you have a sort of a different … It’s a different dance, and it’s very complex I find.

So, I didn’t answer your question, but I do notice a big difference. I do feel that when I’m coming in, say, making Pulmonary recommendations or I’m coming in consulting as an ICU doctor on a surgical patient in the ICU, people are like “What, tell me exactly what to do. I’ll do this, this, this, this, and this.” When you come in as a Palliative Care consultant, people are telling you, “Don’t talk to my patient about this. You can talk about this, don’t reframe it this way.” It’s changing, certainly. I really feel a change, but it’s been a very interesting discrepancy for me.

Eric: So this book is almost a collection of essays and one of the things that I … One of my biggest questions is, sometimes I can’t even remember what I did yesterday. Do you journal? How do you remember all … Because it’s filled with so much detail. How do you remember so much that you can create these wonderful essays, and a whole book about them?

Jessica: I’ve been writing for years. I write, I would love to show you my computer. It’s basically filled with scraps. A lot of times I’ll write a paragraph, I’ll come home and say “Oh my gosh, I saw this, this, and this person”. Interesting stories, and I’ll write a paragraph of them, about each of them. It’ll take me 15 minutes, and I’ll put their medical record number in so I can back and look up details of the case later. In fact as I was writing the book, I definitely had to do that, or even sometimes call my friends in New Jersey, “Remember that case?” And usually they didn’t, but it’s tricky. But I have to sort of do some documentation along the way. I’ve been doing that for years.

Eric: Does that also help with mindfulness, self–care and burnout?

Jessica: I’m terrible at that. This is my big downfall, as a Palliative Care physician is the self–care. I really need to do better at that. I guess in a way it helps with, I wouldn’t say mindfulness, but I think with processing and reflection. I guess that’s a form of mindfulness. I do feel very revved up, and maybe that’s partly my personality, but I feel this sort of burning passion to talk about these things, and when you get me started, it’s hard for me to not spread well, “and then this happened, and then that happened.” Because I feel that we have, honestly, a public health crisis that we need to manage. I just feel like I want to get the word out to everybody so, I’m not very good about settling down and just saying “I did this and now I’m gonna move it aside and go hang out with my kid.” I’m not doing that as well as I would like to.

Eric: What do you think the crisis is?

Jessica: I think people are dying badly, and I feel like I have a front row seat to that in the Intensive Care Unit, which as you know is sort of the place that people get funneled into. If we keep going along, what I call this end of life conveyor belt. I just feel … And, as we all know, when people are informed, they choose differently. I feel like I’m responsible for carrying out treatment plans that I’m not even sure people want. Because, as you know, by the time they come to us, it’s really too late to assess preferences and goals. And we’re working with surrogates who are well-intentioned often, but not necessarily able to do really what the patient would want. We just never know, so it’s a very tough place to be.

Eric: So, that reminds me of a quote in some of the challenges that we face doing this in the hospital. Is it okay if I read the quote?

Jessica: Please. Yeah.

Eric: “These decisions are difficult in any case, but with secrecy, physical distress, and unclear set of personal preferences, there is no real way to know what to do in the very few moments that are left. All options available, to me, felt brutal. Trying to talk to a dying man in extremis about his mortality. Trying not to talk to a dying man in extremis about his mortality. What would you do?” I think that’s often the challenge, is how much distress, and I think you talked about this essay, how much distress do we cause people by having these conversations? And how much distress do we cause by not having these conversations? Especially when there’s so much urgency to have them.

Jessica: It’s the key to it all, and it’s why no matter how good you are, and no matter how much of a support system you have. Ultimately this is very stressful work, because you’re dealing with human beings. That case was a man who was very, very in-stage with PCP Pneumonia, who had clearly avoided all healthcare contacts. I really suspected that probably he didn’t want us to intubate him. I knew it wasn’t really gonna help him, but that’s our default path, right?

Eric: Yeah.

Jessica: Respiratory failure, ventilator. And so, I just … He was really … We had drawn up the medications to intubate him, and he was so terrified. He was looking at us like, “What are you gonna do? Help me, help me.” And I was going to go in, and then I thought, “Oh my gosh, I don’t know. Let’s just sedate him, intubate him.” And then my medical student with whom I had been processing this, said to me “Dr. Zitter, you’ve gotta go in. You gotta tell him.” So I did. I went in and I looked at him, and I said this, “I don’t think this is gonna help, but do you want us …” And he looked at me like a deer in the headlights, and he didn’t answer. And I didn’t know what to do and he looked more and more anxious, and I said “Okay we’re gonna intubate him.” We intubated him and he died within a few hours.

My resident said to me the next day, when I wanted to process the case on rounds, and it was a very distressing case, as you can imagine. This one resident said to me as we were going around the group, “Well, Dr. Zimmer. No offense.” And those words always strike fear. “No offense, but I’m really kind of uncomfortable with the fact that the last words this man heard were, you’re gonna die.” I think about that to this day. Did I … What would you have done? What would you have done? I don’t know. I did what I thought was the right thing in those very moments.

Eric: Yes, so these palliate stories are so powerful. My favorite was the fear of being wrong. I’ll just read a little bit of this here, “But in my opinion one of the most powerful determinates of physician behavior, is the fear of being wrong. There are a small number of cases that will haunt my practice forever. Their memories stifling my desire to speak the truth as I see it. These were patients whose prognoses I had thought extremely dire, but who against all odds had rallied and survived. Or at least didn’t do as badly as I thought they would.”

That strikes me as … rings true to me having just come off service and had some similar experiences there. Where you sort of put yourself out there, and you … When you are making prognoses, we are putting, you know … even though we acknowledge the uncertainty, we are putting our nickel down, and saying this is what I’m worried is gonna happen here. And sometimes we’re really wrong. In this particular case, this was about a patient named George, as you call him in the book. Who had a massive brain bleed, and you were really worried about what would happen if they tried to take him to surgery. Then he ended up making it through remarkably, right? You want to say more?

Jessica: I really was worried about what would happen if they took him to surgery, but I was also worried, I’m gonna be honest, about if he survived.

Eric: Yeah, what would he be like?

Jessica: I really worried that this man would be very, very debilitated and really permanently confined to a breathing machine in a ventilator facility. I felt that in some ways, I mean again, it’s not for me to decide ultimately. But I wanted the wife, I wanted her to have as much information as I had, which is there is a risk that he’ll die, obviously on the table, but we already knew there was a risk he was gonna die. But there’s a risk that he’ll survive, and this is what it will look like. And, he did survive, and it didn’t look the way he would’ve wanted it to, I don’t think. Now, would he have said “Don’t keep me alive.” I don’t know. “Don’t take me to surgery.” I don’t know. But she might have made a different decision had she known what it was really gonna look like ultimately, which I tried to tell her.

Eric: So, in the book, you describe the Big Three and how people treat the Big Three differently. But can you describe for our audience what the Big three is?

Jessica: It’s the Big Three, it might be the Big Four. They’re procedures that the public knows about. That have been sort of immortalized on T.V. Codes, breathing machines, dialysis. These are things people … not necessarily pressers, right? But certainly codes, dialysis, breathing machines, feeding tubes. So, I say the Big Three, but for each person it’s gonna be slightly different ones. The concept is, these are things that people know about and have been revered on television shows or held up as magic pills, and magic solutions.

And so, people think they’re going to help. The point that I make in the book is that there are these things that, even if we as the healthcare team, do not feel that they’re gonna be of significant benefit, they’re certainly not gonna reverse the underlying illness. If a family insists on getting them, we have no choice. If a family insists that they be used, even if we don’t think it’s in the patient’s interest, even if we have some evidence that maybe the patient wouldn’t want it, we really are obligated to give it to them. Because we’ve just built our health system up that way. A neurosurgeon doesn’t have to do an operation, they can come in and say “Sorry, not a candidate for surgery.” The surgeons can come in and say, “Sorry, ischemic bowel, but we’re not gonna take this person to surgery.”

But the ICU physician really can’t say “Oh, you know, I’m not gonna intubate this patient. It’s not indicated, it’s not gonna help this person.” If the family is saying “intubate,” we have to intubate.

Eric: To you think we’re obligated? Or do we feel obligated? For instance, for CPR in the VA system, we can’t change people’s code status from full to D8R. However it’s still in the physician’s judgment when to call a code, whether it be at 15 minutes 5, or 1 second. And I wonder how much of it is a … Because I don’t know of any legal rulings that say a physician has to do a particular intervention. Rather that it’s our risk aversion that makes us feel obligated. Your thoughts on that?

Jessica: Absolutely, and you know, how many times have I picked up the phone and called risk management and said, “Well, what do I need to do here.” The reality is, if you actually do call risk management, which I do a lot by the way, they often really just tell you just to go ahead and do it. Those kinds of situations as we all know, usually arise when there’s some conflict, and there’s some conflict between healthcare team, maybe some family dysfunction. There’s conflict, and you’ve sort of lost the communication line. And it’s not about communication anymore. It’s not about logic, it’s not about truly patient–centered care and assessing goals, it’s about something else, but it’s being manifested in this way. And again, if they are insisting on it, I don’t personally see a real option. Look at the Jahi McMath case, in Oakland Children’s hospital. That was a case of brain death, and the fact that that went as far as it did. And she is now … I don’t know.

Eric: In New Jersey.

Jessica: In New Jersey, I mean it’s mind boggling for us in Palliative Care and Critical Care physicians who think about brain death. There was not really anything they really could do. They were really stuck, those physicians. I think it’s a powerful … It’s a powerful commentary on our societal relationship with technology, that we just are so enamored with technology and we believe in it so much, or this technological imperative. If it’s there is got to be good. That we can’t even, with all due respect to logic, we can’t take it off the table … Certain parts of it off the table, because they’ve been so celebrated and they’re so expected as a right.

Eric: Maybe we can shift gears and talk about your movie, Extremis, which is up for an Academy Award.

Alex: And you’re going to the awards.

Eric: So, the question that I keep on being asked by people who hear you’re gonna be on this podcast, is what are you gonna wear?

Jessica: I don’t know, and I’m going shopping today for it. It’s hilarious, because let me tell you, I was joking before, but I’m currently wearing .. can I describe for the audience?

Alex: Yes.

Eric: You can describe to our audience.

Jessica: Okay, this is a typical … This is a kind of slightly dressed up for me. I’m wearing a kind of a nice pair of jeans. I’m wearing a shirt that I got at a really nice place, so it was probably like, $80. When I was cleaning off my stethoscope with that bleach, I kind of draped it over my shirt. So, I’ve got a bleach stain coming down the center. This is nice for me, so I don’t really know… My friend emailed me yesterday and said, “Who are you gonna wear?” And I said, “Jinx” who’s my dog. And she said “That’s disturbing.” And I said “No, it’s cuddly.”

Eric: So tell us where did the idea of the movie come up?

Jessica: When I … Did you hear about the movie, The Waiting Room? If you didn’t you must see it.

Alex: No I don’t ever think I had.

Jessica: It came out in, I believe, 2012. Director Pete Nicks, whose wife works with me in the ICU at Highland. She’s a speech therapist and she’s terrific. And Pete came in and did this film that was mind blowing, about really access to healthcare, county hospital, emergency room. It’s sort of 24 hours in the day of the emergency room. We saw it at the Grand Lake Theater, the whole was there, and I saw it and I was blown away. An you must see the movie, just gorgeous and compelling, and just the visuals and … And I was at this point writing a lot. Writing for the New York Times, and really, people were responding to it. And I said to myself, and I went up to Pete at the end of the showing and I said, “You’ve got to come in and do a film in the ICU about decision making, it’s a really important topic.” And he said, “oh uhh, I don’t have time. I’m doing this film on the police force in Oakland.” Which apparently just came out, and it’s supposed to be wonderful.

For the next year, I texted Pete every time I had a really interesting … I’d text him probably ten times over the next year, “Pete, it would have been great if you’d been here, listen to this family conference. It was so interesting.” Finally he got tired of me texting him, and he said “Look, I got this friend whose interested in a new project. Why don’t you meet him?” So, we went out to this café, this kind of really hip café in Oakland. I’m with these two directors, very cool guys, and I was not very cool. Anyway, and I was trying to convince this guy, Dan Krauss, why this was such an important topic. And Dan was sort of interested, he’s like “I don’t know, kind of sounds … Like it might be kind of sad, or might be … Why would people want to watch this?” And I was saying this was really compelling, it’s actually not sad, it’s really inspiring, and we can have wonderful outcomes and…

So, he said “You know, let me think about it.” Then, I guess he emailed me a couple days later and said “I’ll come …” I said “Come in round with me.” So he came and rounded with me and we had a really tough case right off the bat when he was there. Young guy with kids, and Dan has young kids, and the guy was dying and Dan’s like “Oh my God, this is just so awful and difficult.” And he said, “I don’t know about this.” I didn’t hear from him for about a month. And then he emailed me and said “You know what. I think I want to come back. I want to conquer my demons on this. I can see it’s an important topic, and I kind of want to come back.” I said “Great, come on.” I was like, “You sure? But okay.”

So he came, and he brought his camera with him, and then went on to just start filming. It was incredibly stressful for me. It was one of the most stressful things. I think if I had to say, what was the most stressful thing in my career, I’d say that filming. Because it went on for about three months and he … People were really weary, as you can imagine. It’s an ICU, it’s not just an emergency room, it’s like an ICU! My colleagues were like “Well, I don’t know.” I had thought we were all gonna be in it.

People were really reticent and uncomfortable, and felt … And every time I asked a patient or family if they would be willing to have Dan come in and film them, I felt like I was in some ways, abusing my right. And so I was very … I felt really stressed. Because my goal is to protect my patients, and yet I felt this was such an important thing. And I would say to them … And Dan was the same way, he’s very, very respectful of people. We both would be like … I’d say “Please. Most people wouldn’t want to be in a film like this, so do not … If you’re interested, think about it and we’ll come back.” Very few people agreed to be in it. Many of the staff didn’t want to be in it. It was very hard, I felt like I was coming in with this film crew … Anyway, Dan just obviously a genius, made this gorgeous film.

Eric: Yeah, it’s amazing.

Jessica: He put it together and I’m just so appreciative. I think he really did a huge service to humanity by putting this film out there in a short documentary format, so people can access it and see it.

Alex: It’s on Netflix, we should say. So, all of you out there, it’s about 24 minutes long. Short, remarkable film. Captures so much of the crush, the life and death decisions, the extreme … call it extremis, which I assume … Is that a word?

Jessica: It’s a word we use in the ICU all the time, and I say it a lot.

Alex: He’s an extremis?

Jessica: He’s an extremis, yeah. I looked up the word, by the way. It means profound physiologic distress before death. Which is what we deal with in the ICU.

Eric: The other important part is that you’ll be at the American Academy of Hospice Pal- Medicine (AHPM) annual meeting. You will both be having a workshop and a book signing, is that right?

Jessica: Yes, I-

Alex: Can you tell us a little about that?

Jessica: I hope you’ll all come. Yes, and to note it’s incorrectly labeled in the program. It says that I’m on Saturday, but I am on Thursday going to be presenting a breakout session, Thursday at 1:30, on Extremis. We’ll show the movie and then we will, have not a huge amount of time, but to talk about three points that I want to bring up, based on examples from the movie, about communication barriers and strategies for us overcoming them in the Intensive Care Unit. Hopefully we’ll give some people some time to process that, and also then hopefully people will join as at our book signing that evening at the exhibit hall at five–thirty.

Eric: Wonderful.

Alex: It’s great and then after that they’re gonna come to the GeriPal PaliMed Party, everybody at AHPM, who’s listening to this podcast will be there, Jessica included.

Jessica: Yes.

Eric: To learn more about that, you can just go to the GeriPal website. We’ll have links to Jessica’s book, to the AHPM correct timeslot, and to Extremis, the movie, and how to get on it on Netflix.

Alex: Should we go out with a little music?

Eric: That sounds like a lovely idea.

Alex and Jessica sing “Over the Rainbow” by Israel Kamakawiwoʻole.

Transcript Edited by Sean Lang-Brown