The Messiness of Medical Decision Making in Advanced Illness: A Podcast with James Tulsky

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

Alex: This is Alex Smith.

Eric: And Alex, I’m very excited today. We’re getting closer to our 200th podcast! And I can’t believe it took us so long to have this person on it! Who do we have?

Alex: We are delighted to welcome A palliative care clinician, researcher, communication extraordinaire, luminary in the field, James Tulsky, who’s chair of the Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute and Brigham Women’s Hospital, and professor of medicine at Harvard Medical School. Welcome to the GeriPal Podcast, James.

James: Thank you, Alex, Eric. It is absolutely thrilling to be here. Better than Oprah.

Eric: So, this podcast is going to be about decision making and communication. It really stemmed from a paper that James just published in Patient Education and Counseling on triadic agreement, about advanced care … advanced cancer treatment decisions.

Alex: You almost said advance care planning.

Eric: I know.

Alex: That’s not controversial right now, Eric…

Eric: That is not controversial at all. Maybe we can talk a little bit about that.

Eric: But, before we get into all those topics, James, do you have a song request for Alex?

James: I do. I chose the song Triad, which is a little obscure. It was written by David Crosby, and it really was made popular by the Jefferson Airplane.

James: It is a kind of spooky song about a triadic relationship, about three people in a relationship. There’s a chorus in there about “Why can’t we go on as three?”

James: I’m not sure it really relates, although since the study is about triads, and this is a triad, and mostly more than anything else, I wanted to challenge Alex to do his best Grace Slick imitation.

Alex: Well, I’m doing this more like David Crosby style. And we’ll see; he’s got these haunting jazzy open chords. We’ll see what happens here.

Alex: (singing)

James: That was awesome. Thank you so much. You got the haunting part.

Eric: You can tell Alex loved playing that song.

Alex: Yeah, it was pretty different. I like the different part. That was pretty neat.

Eric: All right, James. Can we go back in time a little bit? When I think about experts in communication and decision making, your name pops up there at the very tippity tops. How did you get interested in this as a subject?

James: I’ve been interested in this forever.

Eric: Yeah.

James: I actually came out sort of an ethics frame. That was my background early on. So I thought about things using that framework. And it was when I was a medical student and there were really a couple of things.

James: One was that I found that I always … I don’t know why, this is probably a longer conversation. But I wanted to be where the tough conversations were, and I felt that that’s where I added value. It’s kind of a natural place for me. And I felt comfortable entering into that when everybody else didn’t want to be there. So that was about delivering serious news and things like that, and I found myself gravitating.

James: Then the next step of that was decision making, particularly around end of life. I was struck, just listening, observing conversations around me that what was happening was nothing like what the experts were saying was supposed to happen in those conversations.

James: My first study I ever did was at your place, was at UCSF, and I decided to audio record DNR conversations between medical house staff and patients. And see whether or not what happened was anything like what was supposed to happen. And you pretty much know the outcome there.

Eric: What’s the outcome? What was the outcome?

James: The outcome was that they rarely did any of the things they were supposed to do as far as decision-making conversation around explaining the options of treatment, about what’s actually happening.

James: In fact, what they were really doing was trying to push people into decisions by portraying disastrous outcomes on one side, other kinds of things on the other.

James: I mean, we never, ever spoke about what we would call goals of care. These were my colleagues, these are my fellow residents. But this is what was happening. So I tried to shine a light on those conversations. And from then on, I got hooked. Because from a science perspective, I loved audio recording, and then studying and figuring out what was actually happening in these conversations.

James: First I did DNR conversations, then I did outpatient advance care planning conversations, then I did a bunch of oncology conversations, then I did more oncology conversations, and kind of worked from there.

Eric: Yeah. I guess do you think in the time that you’ve been doing this, we’ve gotten any better?

James: …

Alex: Oh-oh, it’s taking him a long time to come up with an answer. I’m worried.

James: Yeah. We have definitely gotten better. And yet, I continue to see many of the same problems. I also, though, think it depends on where you are.

James: There are institutions where people from our field in particular have had a tremendous amount of influence, where there’s been a lot of communication training. All of our interns and residents at the Brigham go through training that hopefully tries to change that.

James: So I actually see them doing a much better job. And that actually feels good. I don’t think many of them would have the conversation today that I saw in the early ’90s in San Francisco. So that, I think, is better.

James: On the other hand, since I train oncologists a lot in communications skills, there’s still a lot of stuff that we can get better at.

Eric: Yeah.

Alex: Can I give my perspective on that? I feel like we have gotten better at the goals of care conversation, and the family meetings.

Alex: I still worry about those code status conversations on the day of admission. Because they are so rushed, and because it’s just got to be documented and the notes and the orders and the signout.

Alex: I’m still having to go back and redo those often, and after our goals of care conversation. “Well, let’s revisit this issue that you talked about quickly on the day of admission to the hospital.”

James: I think you’re right, Alex. That makes a lot of sense to me. And I think the problem is we shouldn’t be having those DNR conversations on admission. That’s the problem.

Alex: Yeah.

James: It’s ridiculous.

Alex: I agree.

James: Because we all know that that conversation about CPR falls out of a much larger goals of care conversation, only naturally falls out of that.

Alex: Right.

James: And held in absence of the rest of it, in fact, it’s going to make it harder to have to go back and revisit it, like you said. Yeah, if it was up to me, I would just eliminate all those.

Alex: … when I was a resident at the Brigham, where you are now, I gave a noon conference talk about this. And I said, “My proposal is we stop having these conversations on the day of admission.” And people were so upset, they stood up.

Alex: They were like, “What? No, you have to! I’m the night float. I got to know whether to code this person or not in the middle of the night. And they’re sick! They’re getting them into Brigham! They must be sick!”

Eric: I’m wondering, though, is it more like going to a nice restaurant? Early on, they may ask you if you have any dietary restrictions. Then later on, you talk about what’s on the menu.

Eric: Is it the same thing? It’s not necessarily asking, because some people have some strong preferences. So it’s not asking which is the problem; it’s not following up on that short discussion later on.

James: Yeah, I think getting to the very specific preferences is just so hard, because they’re so rarely informed.

Eric: Yeah.

James: I think, using your metaphor, if when people came into the hospital, we said to them, “Tell me if there’s anything I should know that’s really important about helping to take the best care of you.”

Eric: Yeah.

James: “And what should I know about you that matters most, that’s going to make a difference in my care of you?”

James: There will be the occasional person who says to me, “One thing I want to know is don’t ever leave me stuck on a machine here forever.” Well, then, okay, let’s talk more about that.

James: But most people are going to talk about other things, which might end up being more [inaudible 00:10:48].

Eric: Yeah. And … I’m going to switch track a little bit to your current paper about the triad, triadic involvement. It’s often more than just the patient’s preferences that are playing a role here. Is that right?

James: Well, that was what was really interesting. We were really curious about what’s the role of the caregiver in decision making?

James: Up until this paper, there were a handful of papers on triads, but not a lot. Most of the literature was on dyadic relationships. And in fact, all the other stuff I’ve done has always been dyadic. Even when we recorded conversations, and the family members are there, we just shoved them aside in the analysis.

James: So we decided to set this thing up…

Eric: When you say “dyadic,” you mean physician-patient? Or-

James: Physician and patient. That’s the dyad, right?

Eric: Yeah.

James: Because unless the patient is incapacitated, in which case it’s clinician and family member.

Eric: Yeah.

Alex: Mm-hmm (affirmative).

James: So we look at it like that. Either one of those dyadic relationships. But it’s a whole different story when all three are available, and all three have capacity.

James: So what we did was we audio recorded … well, we didn’t audio record, actually. We surveyed a succession of 70 triads in cancer care. This was all done at Duke when I was there. Where we identified patients with advanced cancer who had recently made a decision. They’d had a scan, they made some sort of treatment decision.

James: Then we asked the patient, the family member, and the oncologist separately about, first of all, what they thought the goal of treatment was. And the second thing is, how much influence did they think the caregiver had in the treatment decision?

James: And what we found was that first of all, there was a lot of discordance around what they thought the goal of treatment was. That’s kind of old news. We’ve known that for a long time.

James: But we decide, yet again, where, and more likely, and there was only I think 40% of the time, did the caregiver and the patient and the oncologist all agree on the goal of treatment.

James: That’s really problematic, because they’re about to enter into a treatment decision, and it’s all about the goal. So that was one problem. But like I said, it was old news, but it was nice to shine a light on that.

James: And the other thing that was completely new was we also asked about the influence of the caregiver. Again, 30-something percent of the time did they all agree on that.

James: And mostly what happened was the oncologist underestimated what the patient thought the role of the caregiver was in their treatment decision making. Patients put a lot of weight on what they’re hearing [inaudible 00:14:00].

James: But the oncologists, none of us really, are accessing those caregivers and actually including them in decision making in the way the patients probably would want.

James: By the way, one last thing I’ll say about this. Which is that the caregivers underestimated their impact. They thought they didn’t have as much impact as the patients did.

Alex: Huh.

James: So that’s an interesting dynamic that’s going on as well.

Alex: Yeah.

Eric: And do you get a sense of if it’s what the caregiver … I guess the question is, how much of it is what the caregiver wants for the patient, versus the caregiver influencing in other ways?

Eric: I mean, I was just thinking back to multiple cases, including one recently where a patient was in hospice, and decided to stop it because their family member wanted to pursue some other life-prolonging therapies that wouldn’t be covered in hospice.

Eric: And the patient said, “You know, I’m doing this for this family member. I’m not doing it for myself. If it was up to me, I certainly wouldn’t be doing it.”

Eric: Do you get a sense, is that what’s going on here? Or is it something else?

James: I think that is an awful lot of what’s going on. We did some qualitative interviews as well, and we also did an earlier study related to this. And I think the patients feel they need to do what works for their family members, or for their caregivers. Then they perceive that. So there’s a lot of that picture. Sure.

Eric: I know we’re probably going to get into advance care planning in the future, but decision making or with surrogate decision makers, substituted judgment. “I’m going to put myself in this patient’s shoes and do what I think this person would want.”

Eric: Does that throw this idea out the window? Because for a lot of patients, they’re also okay with what my caregiver would want.

James: I think it does challenge the notion of substituted judgment, unless you do true substituted judgment, which is where … This is getting a little meta … but we’re-

Eric: You mean Facebook?

Alex: Yeah, Facebook, right.

James: … but you then have to think about what the patient would want, understanding the patient might want what I would want. But that’s just mind-breaking, right?

Eric: Yeah, you just blew my mind right there. Right.

Alex: But it is important to think that way. I remember when there was a patient in a persistent vegetative state, and we talked to his wife. It had been a fractured relationship, she felt like the teams had stopped listening to her.

Alex: And finally, she confessed to us, “Look, my husband’s disability checks are keeping us housed. Me and his daughter. He would want that.” That’s like putting substituted judgment, understanding what he would want for his caregiver, right? These things are really complicated.

James: They are complicated. Although I really appreciate the frame you put on that, Alex, because I so often hear that story about the checks. It’s used as a way to dismiss, or to suggest ulterior motives.

Alex: Yeah.

James: It’s often a really negative thing, but here…

Eric: Financial conflict of interest there, right?

James: Which by the way, I think happens very rarely. I mean, I’ve seen it.

Eric: Right.

Alex: And yet I think, if keeping my body alive kept my wife and children housed, I could see why, yeah, right? You think about that, listeners? Yeah.

James: Yeah. I mean, that’s like maintaining someone who’s been declared brain dead for a baby that’s incubating inside them. That’s happened too, right?

Alex: Mm-hmm (affirmative).

James: Kind of idea.

Eric: All right, James. What should we take home from this study? What should we…

Alex: Wait wait, before we get to take-homes, can I ask a nitty-gritty question while we’re still on…

Eric: Don’t get too wonky here, Alex. [laughter]

Alex: Okay, I’m not. But my take, my sense is … and you write this in here … that the patients and the caregivers tend to be more optimistic in their goal than the oncologists were. And might it really be that the patients and the caregivers’ goals are more optimistic?

Alex: And is it the oncologist’s goal … I mean, should they be … I mean, certainly they want to communicate that cure isn’t possible, right? Because these patients all have advanced cancer.

Alex: And yet, ought the goal to be to … make the patient and caregiver know that cure isn’t possible, and that the goal of treatment is to improve quality of life, or to live slightly longer?

James: Yeah. Oh my God. It’s a really good question, and I see this all the time.

James: The oncologist definitely wants to feel like they’ve transmitted the correct information. And I hate to say it, but the discordance in belief of goal being cure or not, I don’t think is probably because anything was ever stated by the oncologist.

Alex: Mm-hmm (affirmative).

James: In some cases, they may not have. But they’re actually pretty good.

Alex: Yeah.

James: The classic oncology line is, “We’re not going to cure this cancer. We’re going to treat it like a chronic disease], we’re going to do our best, blah-blah-blah.”

James: The question I think you’re asking is how hard do you have to hit people over the head with that?

Alex: Mm-hmm (affirmative).

James: And even if you do, people are still going to resist. Because there’s some instances have more possibility that the person will either be cured or live for an exceptionally long period of time.

Alex: Right.

James: And if they do that, and they’re going to believe that they’re the ones. There’s a lot of research that shows that.

Alex: Right.

James: Or put themselves into the tail of the curve, right?

Alex: Yeah.

James: Because somebody has to be there. The problem is you have 90% of the people putting themselves in the 10% of the tail of the curve.

Alex: Right.

James: And that’s a natural reaction. Should we support that? I don’t see any reason why we shouldn’t support it. It becomes an issue when it gets in the way of decision making and it then leads to potential harm.

Alex: Mm-hmm (affirmative).

James: That’s the part, or more importantly, leaves people to not be able to fulfill other goals they might have. And that’s, I think, where the tension is.

Alex: Right.

Eric: Well, I guess … I’m not going to … That’s not wonky, but is goals the right thing? When I think about goals, it’s this nebulous, often shared decision: we come up with goals together. What we’re hearing from patients is their hopes, what’s important to them.

Eric: What we’re talking about is our expectations as oncologists or as clinicians, and together, all that messy stuff happens. And we end up with some big-picture goals.

Eric: Is part of what’s happening here, is we’re hearing expectations from the oncologists, and hopes from patients, and there’s a disagreement here between expectations and hopes?

James: Yeah, I think that’s it. I mean, I don’t even like the language of goals. I use goals, I talk about goals in care conversations all the time, but I actually never use the word “goal” with patients.

Eric: Yeah.

James: Because I find that I get this blank stare.

Alex: Yeah. Yeah.

James: What you just used, the language you used, Eric, is more like that. I usually ask them what’s most important. What are you hoping for? What are you worried about?

James: And using that mess of stuff, then I try to make a recommendation that meets it. The catch where the expectations comes in is that what’s the possibility? I want to get a realistic recommendation.

Eric: Yeah.

James: Then how much … understanding there’s actually a possibility I can actually meet that thing that they want.

Eric: Yeah.

James: So I think that the other piece of this is then, do you have to tease out how much uncertainty they will live with, what’s their risk profile?

Eric: Yeah.

James: I find I ought to go there like that a lot. But with some people, you do.

Eric: Yeah, I mean, I think about it too. As I was reading this and I was thinking about goals … Occasionally, I’ll play the lottery. And Alex will tell me, “That’s stupid, Eric. You’re not going to win.” His expectations are that.

Eric: But my goal in playing the lottery is to win. I’m not playing it for any other reason but to win. I also understand I’m not going to win. I have that expectation. But I still have that strong goal, and hope that I’m going to win. That’s why I’m going to put down my dollar.

James: How much money do you spend on the lottery?

Eric: About two dollars a year.

James: Well, here’s my question: Would you do the same thing with $100,000?

Eric: If I was Elon Musk … yeah, why not?

Eric: Yeah, absolutely not. Yeah, when the harms start outweighing any potential benefit- [crosstalk 00:24:01] Yeah. Yeah. Despite my goal still remaining the same, which would be to win the lottery, I just want to play it, because the harms outweigh any risks of reaching my goal of buying a house in Maui.

James: Right, which is like for example, in oncology today with all the oral therapies, a lot of them are actually not all that noxious.

Eric: Mm-hmm (affirmative).

James: The question becomes, why shouldn’t you just keep taking this pill? Because who knows?

James: And the only thing you’re not allowed … At Farber, this happens all the time. The only thing you’re giving up as hospice because you can’t be more … but otherwise, you get everything else.

Eric: Yeah.

James: That makes sense. And I make that recommendation.

Eric: Yeah.

James: It seems to make sense. But the point at which you really need to stop and may have to rethink.

Alex: Mm-hmm (affirmative).

Eric: Yeah. And in the VA, you don’t even have to give that up. You can get concurrent care.

James: … care. Exactly. Love the VA.

Eric: Yeah. This all seems really messy and hard. Isn’t there a path forward? You’re not just talking to patients in front of you. You’ve got this triad, and the triad, as far as a caregiver, may include multiple people.

Eric: And I think from your past that you’ve done, it requires both skill and expertise from the clinician on their part to have these conversations. You have people with different hopes and what’s important to them involved in these discussions.

Eric: Is this just a hopeless, futile exercise around decision making?

James: It’s not hopeless and futile, but it’s messy and hard, and it’s never going to change. And I think we deceive ourselves when we think it’s anything else. And I think there are a lot of people who want to believe it doesn’t have to be.

James: But when I first started in this game, I had a fantasy. That I actually thought about writing this book about the outcomes of each disease, and being as specific as possible.

James: I really believed that you could just map it all out there, and it would all be like a probabilistic exercise. It was my meta-logical thing that I was trying to put out there.

James: And I actually continue to see this, particularly young ICU docs tend to have this inclination as well. If we just got it all right; if there’s an algorithm that would solve this decision-making problem. And the more I do this work, the further away from that I think we are.

James: You know, it’s about so many other things. It’s about emotions, it’s about identity. It’s about other people involved, and who you love. And the nature of those relationships. And we’re just not going to make it simple.

James: And I think that when we try to force it into this logical decision-making box, we get into trouble. I really push back on that a lot. Yeah, I’ve tried to run away.

James: It might be decisions earlier on that work a little better. Maybe the prostate cancer decision about radiation, surgery, whatever, you can line up all of your preferences and you can make all that work … maybe. But the stuff we deal with? Don’t see it.

Eric: What’s the path forward, then? Given how messy it is, that we still have to be part of these discussions …

James: To quote [inaudible], all you need is love. Alex and I were in a meeting last week, and we had a wonderful talk. And said that the answer is love.

James: I think there’s a little bit of truth in that. I think it’s about being present with people, trying to understand as much about who they are as people. Trying to find out really what drives them. Seeing the emotion where it’s there, and recognizing and responding to it and engaging with it.

James: And then, helping to make a decision. Making a recommendation that you think matches as well as possible. That is not a paternalistic thing at all, because they still have the choice. But you’re guiding people in that way. And I think people really want to be guided.

James: I mean, there are patients that are not like this. Well actually, I’ll tell you the story. I had this guy, he had metastatic prostate cancer. He was absolutely brilliant. He had been trained in the Soviet Union as a physicist. He was a nuclear physicist, PhD. He was a refusenik; he was actually in prison there, Siberia.

James: And he came to this country and he decided to abandon physics. He retrained and became a lawyer, was a very successful civil rights lawyer here.

James: And now he was living with this disease, and he had incredibly particular ideas of exactly how he wanted everything to do. He was about the most rational person I’ve ever met, including an awful lot of our conversations, where he wanted a rational death. He had actually rented an apartment in Vermont so that he could obtain assisted dying when the time came.

James: And what was so interesting was despite his hyper-rationality, it just all failed. It all failed. It didn’t work for him. He couldn’t outthink himself of the pain and suffering.

James: Then his wife, who was not like that. So the end of everything else, finally because his decision making was so explicit, but he was also so stuck, no decisions ended up getting made. And finally he started slipping away. And his wife was just agonizing because she knew how important it was to make it for him.

James: And I finally had to make it for her. Just take her out of this and just tell her what to do. I mean, we talked a number of times afterwards. It was the right thing. Like that hyper-rationality didn’t help.

Eric: Yeah. So I got another question. You wrote with Josh Lakin and Rachelle Bernacki, two of my favorite people, a paper in Annals of Internal Medicine, about thinking that communication as a medical procedure. We’ll have a link to that in the GeriPal Podcast Notes.

Eric: When I think about a medical procedure, you have clear steps, you do it. There’s an organized flow diagram pathway. Emotions are not part of it. Deviation can be considered, but generally not part of that flow diagram, unless it’s part of that deviated pathway.

Eric: Is communication really like a medical procedure? Or is it something very different?

James: I think it’s absolutely a medical procedure. I think we bring a set of skills, and we bring a talking map and a road map to get there.

James: Now that doesn’t mean that things don’t go haywire. But it’s no different than being in the middle of surgery and somebody will pop an artery, right?

Eric: Yeah, yeah.

James: Blood’s spraying all over the place, and you’ve got a way to manage it. Then when the blood spurts all over the place, you invoke another set of principles: clamp and … I don’t do surgery, but … whatever they do in there.

Alex: Can I just note that I’ve definitely had the blood spurt all over the place in the family meeting?

Eric: Literally or figuratively, Alex?

Alex: I’ve been in that position, been like, “Oh, no. We need to do something now.”

James: But what did you do? You relied on skills. And, if you’re really good and you’ve done this a lot, it was automatic.

Alex: Right.

James: Right? The same way the surgeon knows clamp. You immediately knew whatever the tool you used in that moment was. Did you get curious? Did you praise? Did you acknowledge the emotion? Did you bring in somebody?

James: Whatever it was, it was an instinct that you knew from all your training and practice.

Alex: Yeah. I want to ask…we started off this conversation talking about how you got first interested in this, and the work you did at UCSF, first tape recording, residents having discussions, then experts in the field.

Alex: We haven’t talked about VitalTalk, but of course, many of our listeners know you are one of the … I don’t know if “principals” is the right word-

James: Founder.

Alex: … founders of VitalTalk, which has been one of the reasons that we have the vehicles behind improved communication skills in the setting of serious illness in this country, and probably beyond.

Alex: Where do you see things going from here? What’s the future of communication research and communication skills? What are the big barriers that still remain, and what do we need to do to overcome them? Where do we need to do the most work?

James: I think research and skills, or research and training, are two different directions.

James: I think on the research side, the place I believe we will go to, and I want to see us go to in communication, is something that I refer to as the basic science of communication.

James: That I really want to see communication increasingly broken down to its component parts and studied. So that we can figure out how … It’s really broad sweeps that we talk about now.

James: And even in my papers and the audio analyses we’ve done, we’re talking about do you respond to an empathic opportunity? It’s a bit of a broad concept, right?

Alex: Yeah.

James: But all of the little moves that we do, and how they’re responded, we also don’t know how do they respond to people? Why? How does different diagnostic language work? And I think it’s super subtle. But why not? And I think we can study that. I think that we need to standardize sort of mouse models to study it in.

James: One of my colleagues, Justin Sanders, who has been here at Dana-Farber with us for a long time and just moved to McGill-

Alex: Oh.

James: … but Justin was working with some virtual reality lab people at Bentley College here in Boston. And we’ve created a virtual oncology office. Where you can go into this thing and you have an avatar oncologist who you’re talking to. And you can actually practice and study very specific comments. “Look at how this works versus how that works”, and really come up with the component parts of communication.

James: So I think of the whole variety of ways of doing this, I think that’s the direction we want to go in. Because we really still want to know what is right.

James: It’s interesting, when I teach, I do a lot of training of oncologists. And frequently they’ll say, “I do it like this and this should work. I’m not so sure, but I actually don’t have the data to say that’s probably about right.”

James: So I think that’s one direction.

Eric: I guess, going to that question, you have this A-B testing. Did this one work better than the other one? But how do you define “work better”? Is it patient satisfaction? Because we know if we give really good news, people are going to be happier.

Eric: Is it less conflict, which would mean conflict may be bad when sometimes it’s good? Would it be agreement with a prognostic statement? What is good? What is better?

James: Yes, I mean I think it’s all those things. For example, one of the things that we were playing around with, and will continue to be doing, is we put little electrodes on their fingers and we actually see how sweaty they get and all that, so you can measure anxiety and things like that.

James: I do think anxiety satisfaction is one set. I think another thing is whether or not people retain the information. I think the satisfaction with the encounters, the trust; I mean, a huge one here is what engenders trust? Because at the end of the day, that’s the most important thing, is trust in the clinician.

Eric: Yeah.

James: I think you can measure all of these. I think we’re that sure.

Eric: And I guess timing of trust, right? Your trust in somebody may be different the day of getting some prognostic news, versus three months later, potentially if that prognosis turned right or wrong.

James: Correct. Correct. Ultimately, you’re right. I mean, that outcome’s going to make a difference. But there are probably ways that we can say it, that’ll leave people feeling more like …

James: I was about to say “seen and heard”, because that’s another measure that we use now, is we get it seen and heard. So I think all of them.

Eric: What’s the next thing for you? What are you most excited about working on right now?

James: It’s really interesting. My own research … I’ll just be really honest. I’m not sure where my own research is going. What I’ve been doing mostly for the last few years is mentoring others. Of that, and so for me the exciting thing is what other people are doing, and I can help them do.

James: A lot of it’s not the stuff that I necessarily would do, and I’ll be really honest with you. I was thinking a little bit about this podcast, I was thinking about this paper, and I thought you might ask something like this. And I was trying to decide, do I have a new RO1 in me for the next thing? Or do I want to follow all of my mentees?

James: I’m not sure about that. One of my mentees here is doing psychedelic-assisted therapy in cancer. I’m just totally jazzed by that.

Alex: Interesting.

James: I think it’s really cool and it’s fun to work with him. But it’s not what I would have done primarily myself.

Alex: Yeah.

James: And I do think we have a repository of the gazillion audio recorded conversations and continuing to play with that. So it’s mostly my mentees again, who are playing with that.

James: It’s not to say that I don’t have the next thing. I’m not sure it’s going to be me generating it or not. I’ve never said that publicly, though I think I just outed myself in a way. But, yeah.

Alex: Thank you. And of course, you’re making amazing contributions through mentoring. And it probably has a multiplicative effect on what you’re able to accomplish.

Alex: Yeah…so satisfying.

James: Yeah.

Alex: I want to shift gears. We’re running out of time. But we talked about communication and serious illness. Where do you see advance care planning fitting in with this?

James: Yeah, it’s been a thing recently. I recognize that there’s a lot of controversy around this idea that advance care planning, some of us are saying it really hasn’t worked, and hasn’t moved the outcome measures that it was supposed to move in any appreciable direction. I think all of us are talking about advance care planning, particularly advance directives, but other things that look like that.

James: I do still think the goals of care communication, serious illness communication, like this paper here: What was this about? This was about people who are living with cancer, there’s a transition in their care, they need to be making decisions, that decision wields on that is still critically important.

James: If you want to call that advance care planning, then I’m all in support of it. If you want to refer to that as advance care planning as this thing where you’re sitting around your living room for this hypothetical thing that might happen down the road, and you’re not even all that sick yourself right now; I think it’s time for us to move away from that kind of research, and actually …

Alex: Because it doesn’t work?

James: Because it doesn’t work, and all the energy that’s put into it could be better put into other places. And particularly when you don’t select populations.

James: It’s useful to have a conversation when you’re 60 years old around your kitchen table about what you might hypothetically want. It’s just hardly likely to play out in any real way, when you’re actually confronted by that thing.

James: But if you’re sitting there living with Stage 4 cancer, yeah. I think you start going through some [inaudible 00:42:10]. And make sure that the care you get continues to align with what’s most important.

Alex: I guess, having come from Dana-Farber and Brigham to San Francisco, working in geriatrics and palliative care, I find that there’s no bright line between when somebody becomes seriously ill. And that they get older, and we know that things start to fall apart.

Alex: They get disability, they get some cognitive impairment. They accumulate chronic conditions. And that accumulation of them, when it’s all put together, is that serious illness? And when did it become serious illness?

Alex: I have trouble finding a line in which we say, “Okay, that was before they were seriously ill. And that’s advance care planning. Now, they’re seriously ill, and we’re talking about serious illness communication.”

James: So here at Dana-Farber we have something called Pathways, which is a program the oncologists use that as patients navigate along their illness, it basically recommends treatments at different times.

James: What we’ve done is we’ve identified through prognosis nodes in pathways, where that whole disease group, like thoracic oncology, agrees that this point in your illness trajectory is a poor prognosis node. And usually what they’re thinking is it means like a less than one year survival.

James: So the question’s what’s the poor prognosis node? I agree, it’s mushy. You don’t enter into it with a scan. Oncology’s a lot easier. If you get a scan, everybody knows that’s the moment.

Alex: Yeah. Yeah.

James: But if you look at the person and you use a surprise question, you’re there.

Eric: Well James, I want to be mindful of the time. It’s been great having you on the GeriPal Podcast, finally.

Alex: For the first time.

Eric: For the first time. If you had a magic wand, and you can change one thing that the field of palliative care is doing, do you have something that you would do?

James: Wow.

Eric: You can think about it. You can get a little song. Alex? Give him a little bit of a song, and then we’re going to back to that question.

Alex: Sounds good. A little bit more of Triad.

Alex: (singing)

Eric: That’s awesome. Thank you, Alex. James, coming back to the question. Your little magic wand.

James: Loving it. I think we’re getting better at this. I think it is to understand the world from the perspective of the specialists in medicine that we work with. And that’s where the care is getting delivered, whether we like it or not.

James: I think the more we understand about their world, and about the care options for their patients, for the patients that they see, we can then end up doing a better job of treating them.

James: That’s something that, like I said, we’re getting better at, and we’re leaning better with specialty care. Working in a highly specialty environment, I realize the value of being able to do that. I’m not sure of the right thought I was going to say, because I just say what comes to mind, and that’s where my head’s at.

Eric: Yeah, it’s almost using those palliative care skills that we have with patients, but also direct them towards our specialists, our referral sources, too.

James: Yeah. And understand the unique aspects of the care they get and why they end up doing what they do, and how it’s embedded in the culture and the science in what they’re doing. And then the better we can align with that, the better care we’ll end up giving our patients.

Eric: Well James, thanks for that answer. Thanks for joining us on the GeriPal Podcast. It has been amazing having you here.

James: This was so much fun. And it’s still better than Oprah. [laughter]

Eric: Thank you, Archstone Foundation for your continued support. And thank you to all of our listeners for supporting the GeriPal Podcast. If you haven’t already, check out our new website. We redesigned it, welcome any feedback as well. Bye, everybody.