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Living with and studying serious illness: Podcast with Randy Curtis

 


Randy Curtis, a paragon of palliative care research, was diagnosed with ALS in March. 

Randy is in a unique position as someone who studies and cares for people living with serious illness, who now shares his reflections on being on the other side, to reflect on the process of living with serious illness.  His reflections are illuminating and inspiring.

We talk with Randy about his experience being in the patient role, rather than the physician or researcher role.  We ask if knowing the prognosis for his subtype of ALS is helpful to him, and if he’s seeing a palliative care clinician.  We talk with Randy about his legacy, principally his focus on mentoring.  We talk about how his approach to his life, his clinical work, and research has shifted in the face of living with serious illness.  We end by talking about our favorite “Randy Curtis” studies.

Thank you Randy for modeling vulnerability and willingness to talk about ALS. Thank you for your mentoring which has nurtured a veritable forest of trainees, and for your research which has improved care for people living with serious illness and their families.

And here’s to your song choice: a “good life” indeed, by any measure.

Links:

-@AlexSmithMD


  


You can also find us on Youtube!

 

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TRANSCRIPT

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

Alex: This is Alex Smith.

Eric: And Alex, we have a returning guest with us today, don't we?

Alex: We are delighted to welcome back Randy Curtis, who is Professor of Medicine at the University of Washington, where he's also Director of the Cambia Palliative Care Center of Excellence. Welcome back to the GeriPal Podcast, Randy.

Randy: Thanks so much. It's great to be back.

Eric: Randy, we have a lot to cover today. But before we get into the topic at hand, do you have a song request for Alex?

Randy: I do. The song is Good Life by One Direction.

Alex: All right. This one has a little bit of whistling, which I enjoy, a little bit of syncopation, which I find a fun challenge. So we'll see what happens.

Alex: (singing)

Eric: Randy, can we ask: Why'd you pick that song?

Randy: Yeah, well, as you both know, I was diagnosed with ALS this past month, and this song ... well, the diagnosis has given me an opportunity to really reflect on my life and what a great life it's been. And how I want to live that life going forward. This song captures some of that for me.

Eric: When I think about the people who have made some of the biggest contributions to our field in palliative care, not just from studies and publications, but the sheer amount of people that you've mentored, and continue to do so. Hearing it almost makes me want to cry.

Eric: Just because you've been such an important part of everything that we do. First, thank you for all of that.

Randy: Well, thank you. I really appreciate that. This brings up a lot of questions and issues around my life, and as you've said, I think mentoring has been something that's been very, very important to me.

Randy: Well, the best thing about which I'm most proud. I should also warn you that if I become emotional, I will become mute. That's one of the special gifts of ALS is that I can't tear up and continue to speak. If that happens, you guys may be on your own for a little while.

Eric: Okay. You know, if it's okay with you, because again, you have done so much for the field, and when I think of the experts in palliative care, both in building our knowledge base and our expertise, and from a clinical perspective too, I wonder: since you've been through this process from the diagnosis to where you are now, is there anything that surprised you from being on the other side? Being not just the palliative care, the critical care doctor, but the patient?

Randy: I'm not sure I would say this surprised me, but one thing has really reaffirmed for me is that ... what I care most about from my providers is that they care about me as a person.

Randy: I mean, that's something that we've been teaching in palliative care for 30 years. I can't say it's a surprise. But it is a surprise to me how powerful it is.

Eric: Yeah. Has it changed any part of your perspective on how we should be caring for patients with serious illness? Or, again, what our role is in palliative care for people with serious illness, like ALS?

Randy: Yeah. You know, I come to this with a lot of resources and context and people I know. And yet, even so, even with the connections I have, having that extra layer of support, as we love to say, is so important. It's been so important for my wife and I.

Eric: Yeah.

Alex: Are you seeing palliative care, Randy?

Randy: I have set up my first visit with palliative care, so I haven't put my seeing palliative care yet, but I'd say about 40% of my friends are probably there by themselves. Yes and no.

Eric: So you were diagnosed in March, right?

Randy: Yes.

Eric: I have the opportunity to talk with a lot of people from a lot of different places. And I've noticed that you're still mentoring a lot of them, and doing a lot of stuff from a professional standpoint.

Eric: I wonder when you think about this diagnosis, has it changed, though, how you think about your academic priorities?

Randy: Absolutely.

Eric: Yeah?

Randy: Absolutely. What this diagnosis has done for me is what I wish I had done 10 years ago, which is really to focus in on what is most important. And let a lot of other things go to the side.

Randy: What's most important to me is focusing on the people I'm mentoring, say at the center that I direct for the future, for the leadership transition. And really focusing in on those things.

Randy: You know, I have begun to feel like one of my mantras now is to live every day like you have a terminal illness. What I mean by that is really being able to think about what's most important, and focus on that. And not get distracted by all the other distractions that come up.

Eric: Are there projects that you're currently working on that you're really excited about or ... you want to make sure it comes to fruition or see where it goes?

Randy: Yeah, there's really two main interventions that I've been focusing on in the last five years. One is the Jumpstart Intervention to try to promote growth and care discussions. And we have a randomized trial; actually two randomized trials of the Jumpstart in the acute care setting.

Randy: Then we're really developing a program of research to look at this in different settings, and to try to make it much more scalable than the original intervention that we published.

Randy: That original intervention was very successful; I'm very proud of it. We elevated goals and discussions from 31% in the control group to 74% in the intervention. I actually talked about that on the last GeriPal Podcast.

Randy: But it requires surveying patients to create the Jumpstart. And it's just not very scalable. So now we're trying to do that where we generate a Jumpstart from information in the EHR so we don't have to survey people. I'm excited about that.

Eric: ... So many different ways I feel like we can take this conversation. ... I'm wondering if it's possible to go back to thinking about ... I think part of what has made you such an incredible resource to the field has been the mentorship that you've provided. And that you continue to provide.

Eric: And then when you even think about Jumpstart and all these other interventions, thinking about next steps. I wonder if we can go back to advice for the people listening on this phone call?

Eric: Do you have any over-arching themes of what makes a good mentor? What's worked for you? Because I've got to say, you're pretty exceptional in that regard, pretty much to everybody that I've talked to.

Randy: Thank you. I have been thinking about this and ... I think perhaps for me, one of the most important pieces of advice for mentors is ... is something we can draw on our palliative care skills for, which is really listening.

Randy: As a mentor, one of the most important skills I've learned is being able to listen to the person you're mentoring. Help them understand their values and goals to do well. Help them articulate them, and listen to what they are, and figure out how to support that.

Randy: I think I'm a firm believer in mentoring being a two-way street; that mentors have to get something out of it, as well as mentees. And that's an important thing for mentees to realize.

Randy: But as a mentor, even though it is a two-way street, I believe that the really good mentors understand that it's not about us. It's not about what's good for us, or what we do. It's about who this person is in front of us, and how do we help them do what really will make them happy?

Eric: I mean, in some ways it sounds like you're describing a great family meeting.

Randy: Yeah.

Eric: You start off listening to them about how things are going. And we move on from illness understanding to goals: What's important to you? What are you worried about? It's like a junior faculty member, what are you hoping for?

Randy: Exactly.

Eric: Before we even get into fix-it mode, which is one of the things I can help with right now, it's funny how we know all of these skills work in palliative care, but oftentimes we don't use it in other portions of our life.

Randy: Yeah.

Eric: You can probably talk to my wife; I have an emotional IQ of a rock at home. But I try to build those skills up when I'm seeing patients.

Randy: Yeah, I think that's absolutely right. I also think there's an important piece there that's another parallel which is, in a family meeting, one of our jobs is to help families understand what's possible and what's not. I think we need to do that with the mentees, too, as well.

Randy: Because this field is so complicated. Nobody can come into it new with a good sense of what's possible and what's realistic. I think we need to find a way to do that that aligns with what our mentees are interested in.

Alex: We did a podcast a little while ago, we talked about some mentoring points. One of my favorite questions, as all my mentees know, is ... Well, this is kind of interesting. But what's the problem?

Randy: Right.

Alex: What is the problem that you're trying to address? Is there a favorite question that you put to your mentees? Or a phrase that you're known for, or stylistic approach?

Randy: Well, I think one of the things I'm known for is really helping people to think ahead and plan ahead. And understand, for example, in research, if you want to write a grant, you need to be working on those names a year in advance.

Randy: Now, I'm a really big fan of being able to think ahead about where you want to go. With the possibility that that can change. But planning ahead, I think, is so important and necessary. And I think that's one of the things I'm known for.

Alex: Yeah. I love how many parallels there are. Here we've got the advanced care planning mentees.

Randy: Yeah. Yeah.

Alex: So many parallels between palliative care practice and...

Randy: I also believe that it's very important to help mentees figure out what they want to do, what they're interested in, what drives them. And at the same time, how to capitalize on the opportunities and resources available to them through their mentors.

Randy: I really believe that where I think people have been most successful is really being able to say, "Well, I eventually want to get here. But right now, the opportunities available to me will take me in this direction. I'll learn the skills and then eventually go where I want to go."

Eric: I mean, I'm guessing too, in palliative care skills, it's breaking bad news too, sometimes. It's-

Randy: Yeah. I think that's right. I think the mentors that are constant cheerleaders and says everything's great, every idea's great, can do a disservice to mentees.

Randy: I think sometimes you do have to say, "You know, that's an interesting idea, but it's just not feasible, given the resources you have."

Eric: Yeah. I also wonder, as you're living with this disease, has it changed at all your thoughts about the mentoring process? I mean, because it all sounds like it should; these are all great things. But I'd just love to hear that.

Randy: Well, I think the biggest thing is it's really shortened the timeline to when people have to be independent from me. And ... one of the other things I've noted over my career is that there are some really good mentors who can help their trainees as long as their interests are aligned. But as soon as they diverge, they're no longer helpful mentors.

Randy: And the really exceptional mentors, in my opinion, in my mentor's life experience, are able to continue to help and support their trainees even when their interests do diverge.

Randy: And so for me now, I need to be thinking, "Okay, how do I set each mentee up for when I'm no longer here? What do they need to really be able to succeed?"

Randy: Sometimes that's identifying another mentor. Sometimes not; sometimes just saying, "You know what? We all need mentors for our whole lives, but you're at a place right now where you may begin to look for mentors for different things, but not be like you have one person who's mentoring you in your primary interest."

Eric: And Randy, because we're talking a lot about what's ahead for you as a mentor; I was going to ask, when you think about the future, in living with this disease, and being an academician, what do you see the future has in store for you?

Randy: Well, I mean, I don't know. I know what the median survival is for ones with ALS.

Eric: Can I ask, is that a helpful number? We talk a lot about prognostication in palliative care.

Randy: I think it is. I think it's a helpful number for me. But I will also say the other thing that's helpful for me is that I understand distributions, right? I mean, to me, survival may be two to four years.

Randy: But I understand that there's a reason I have the [inaudible 00:20:48]. And I don't know where I'll be. But it really does help me when words borrowed from too many barking orders, it helps me hope for the best and prepare for the worst.

Randy: And I need to have a plan that has me exiting in the next one to two years. I hope that's not the case, but I need to have that. I need to think through how I want to live my life now, if that is the case.

Eric: Yeah. I think back to reading other people who are dealing with serious illness, and who continue to work. ... Oh Alex, now I'm blanking. The neurosurgeon again, we did a book review? Was it-

Alex: When Breath Becomes Air?

Eric: When Breath Becomes Air. What was his name?

Alex: Kalanithi.

Eric: Paul Kalanithi. He was somebody who continued to work, continued to work, having a serious illness diagnosis.

Eric: And I think for a lot of people, when we think not having this diagnosis, are you thinking about, "Oh, I wouldn't keep on working. I'd stop working. I'd focus on all these other aspects of my life."

Eric: How do you think about that? There's a lot of talk in academics about work-life balance, and finding that right balance. How are you thinking about balance, especially having this diagnosis?

Randy: Yeah, I'm changing the way I work a lot. I'm spending more time with my family. I'm focusing on other things right now. But I do want to continue working. I love what I do.

Randy: I've decided to give up clinical work. I think my speech makes it hard to run rounds in the ICU or run a family conference.

Randy: I've always been proud of the kind of doctor I am. I think I'm a good doctor. But with the time that I have left, it's not what I want to focus on. I just want to focus on the mentoring, building this program so it can really take off in the future.

Randy: So I have changed what I do, the way I work. I work less than I used to. But I'm also focusing on my family. I just got back Saturday from a two-week trip in Paris. My wife and my daughter and my daughter's best friend.

Randy: It was a wonderful two weeks. And it was really important to me that I be able to do that while I can eat and drink and enjoy the Paris I'd fallen in love with.

Alex: Yeah, a very important part of Paris is the eating and drinking.

Randy: Yeah, Indeed.

Alex: And I know you have colleagues in Paris. You've done sabbaticals there.

Alex: You've been somebody who's worked well in teams. I wonder if there's thoughts there for our listeners about success in academics, and working in teams, particularly in the fields of palliative care, critical care.

Randy: Yeah. I really enjoy working in teams. But one of my credos, one of my primary goals, is to work with people I really like, and even love.

Randy: I have been very selective over the years about who I choose to work with. I've been selective about the kinds of jobs I've taken, because there are jobs where you don't get to choose who you work with. But when you run a center, you do.

Randy: So it's really driven me to build teams, to be part of teams with people I really enjoy working with.

Eric: That sounds like another great piece of advice for all of the junior, middle or senior faculty that listen to this podcast. Making sure that we work with teams that we work well with and we like. And that oftentimes we have more control than we think.

Randy: Yeah. I think that's right.

Alex: We talked a little bit before, and you mentioned at the beginning that you're doing more thinking more about your legacy. I wonder if you could say a few words about what you're hoping you'll be remembered for, what your legacy is, in reflecting on that issue?

Randy: Yeah-

Alex: We'll get into talking about our favorite Randy Curtis studies which I'm excited to talk about, because I have so many, it was hard to pick two.

Randy: Thank you. I really do feel like my biggest legacy is the people I've mentored, and what they accomplish. You know, individual papers, I love them; many of my papers, I should probably love them all. But the people have been more important to me that I've mentored, and what they can then go on to accomplish. I've always felt like that's what's most important.

Eric: All right, Alex. You're excited.

Alex: Right...

Eric: I want to hear your list. When you think about your favorite Randy Curtis article?

Alex: There are so many I could choose from, but here are my two favorites that I use the most often in teaching.

Alex: The first one is, this was a question on the palliative care boards for our listeners who are palliative care trainees. This is a publication titled Family satisfaction with family conferences about end-of-life care in the intensive care unit: Increased proportion of family speech is associated with increased satisfaction.

Alex: I love the way that the title ... it just preaches the message right in the title. Increased proportion of family speech is associated with increased satisfaction.

Alex: You were senior author on this, speaking of mentoring. This came out in Critical Care Medicine in 2004. This is like standard part of palliative care canon now. And it's one of the first things that I teach trainees when we're talking about a structured approach to family meetings. Any reflections from you, Randy, about this particular study?

Randy: Well, this one is one of my favorites as well. When I present my research, you can tell when you make a point that's really salient, that catches on. This is one that always has. It's so simple, and yet so important.

Randy: I will say, speaking of mentoring, the first author who wrote the paper, the first draft, was Jonathan McDonagh. Jonathan was one of my mentees, and this paper just announced was his idea. He was made as a resident and he's the one that went to painstaking measuring time for each new type of speaker.

Randy: He went on to do cardiology and practices now in Alaska. And I just love this paper that's one of my favorites and your favorites, was really done by a mentee.

Eric: Randy, why is that time that they're talking, results in improved satisfaction?

Randy: It's all about listening. The same thing we were talking about before we mentor, it's about the willingness and ability to really listen to patients, families, mentees, understand what the issues are for them, what's most important to them. I think that is simply the most important healthcare skill there is.

Eric: And that actually reminded me, I wanted to go to an article that I think you were like a deep middle author on. It was based on the VALUE mnemonic. It was a New England Journal article; going to Paris, right?

Randy: Mm-hmm (affirmative).

Eric: It was out of France, about a communications strategy and brochure for relatives of patients dying in the ICU. Using basically the VALUE mnemonic, which was to value Appreciate what family members said, to acknowledge the family members' emotions; to Listen; I love it. Listen was one of the parts of that mnemonic. To ask questions that would allow the caregiver to Understand who the patient was as a person; and to Elicit questions from family. Five simple things.

Eric: I love presenting this one, because these five simple things end up in a New England Journal paper. And I found out the people who got this intervention and this brochure on bereavement, they had improved outcomes as far as bereavement outcomes. Is that right?

Randy: Yeah. That's right. You know, this was the paper that really forged my collaboration with Elie Azoulay and Nancy Kentish Barnes in Paris. And has been such an important part of my career.

Randy: When we sent the paper to the New England Journal, the biggest problem the editors had with this paper was how do we explain how profound in effect this simple intervention had? And we went back and forth with them for six or eight times. That was really the primary issue.

Eric: Alex, we're going to do more lightning rounds -- other favorite papers.

Alex: Okay. I love talking about this one. This one makes for great presentations, by the way, to our listeners.

Alex: This is Alterations during medical interpretation of ICU family conferences that interfere with or enhance communication. Published in Chest, 2008. Randy Curtis, senior author, first author, last name Pham?

Randy: Yep. Correct. Kiemanh Pham.

Alex: Kiemanh Pham. And this one is just so great if you're doing a teaching about the importance of using professional interpreters. Yet also cautioning that even with a professional interpreter, you need to check for understanding.

Alex: And I love the way in this article that you included the texts themselves. Just to set it up for our listeners, in this study, you recorded interpreted family meetings that were not conducted in English. Where a professional interpreter was present and did the translation.

Alex: You took those recordings and a separate research interpreter reverse-translated them back into English. So now you have the original English, and you have the comparison of what was translated. And you can compare the two, and it makes the case that you included the actual text itself within the article.

Alex: For example, about half the time there was an alteration in the speech, and 90% of the time it had negative impact on communication. And sometimes it was really obvious.

Alex: For example, doctor says, "I don't know. This is a very rapidly progressing cancer." And the interpreter translating says, "He doesn't know, because it starts gradually."

Alex: In this case, it's just diametrically opposite. Very rapidly progressing cancer becomes, "He doesn't know because it starts gradually." And people get that; okay, that's a big problem.

Alex: But what I think really sticks with people more are the subtle examples. Here's one.

Alex: Doctor says, "The problem with this option is that he may have to stay on this machine for the rest of his life." And the interpreter translating says, "But the problem with this option is that he will have to stay on this machine for the rest of his life."

Alex: I don't know if our listeners caught that, but the "may" became a "will." "He may have to stay on this machine for the rest of his life" became "He will have to stay on this machine for the rest of his life." One word, very subtle, and yet has profound implications for the family's understanding of prognosis and what lies ahead for this patient.

Alex: So this just hammers home to me the importance of checking for understanding. And when I teach this, people just get it. They get it.

Randy: Yeah.

Alex: Can you continue, Randy, about this?

Randy: Yeah, I love this paper too. Another one that was driven by a mentee. And I think you're absolutely right, Alex, that the take-home message is check for understanding.

Randy: But the other important message, I think, is to understand how to work with interpreters. I think a lot of us, certainly me before we did this work, would just, we wouldn't have any conference. There's the interpreter, start talking, and I thought I was being a good doctor working with an interpreter. But I spoke slowly, and stopped once in a while.

Randy: But not understanding the situation that they're in in these difficult family conferences, and we have since learned to include the interpreter in our pre-conference huddle with the team. And our post-conference debrief. To really view the interpreter as a integral part of the team that's communicating with this family.

Alex: This is part of a sequence of studies, I should say. I put them in the Show Notes associated with this podcast.

Alex: There was another one where you talked with interpreters about what it's like to be in these serious conversations. And they say, "So often the meeting ends and I just am dismissed."

Randy: Right.

Alex: No follow-up, there's no debriefing. And part of our role is to help the professional teams, including the interpreters, process and work through these really challenging life-or-death discussions: high, high emotional content.

Randy: Yeah.

Alex: So that really hammered that point home to me as well.

Randy: Yeah.

Eric: Okay, I'm going to switch gears. I also got to say I love all the papers you did. You and Doug White together, it's like '80s Lakers teams. I love everything that you guys did. There was a great Chest paper, 2008, Practical guidance for evidence-based ICU family meetings. That one, still I go to. There's a great picture of going from paternalism, where doctor decides autonomy, and I still use that in my teachings. I also love that.

Eric: And there's another one that I think you did with Doug on Empathy in ICU family meetings, where a third of family meetings, there were no empathic responses when it was recorded and listened to. And, empathy, empathic responses when used were actually associated with improved satisfaction of family members. Another one that I love going to. I love that combination.

Randy: Yeah, that's one of my favorite teaching points as well, one of my favorite papers. Doug White was a distance mentee of mine. He was at UCSF, I was at UW.

Randy: And boy, it just brings home the point about how important mentoring is, and how important it is it be a two-way street. I mean, I learned as much from Doug as he ever learned from me. And forged a relationship and a partnership that has lasted my whole career.

Eric: My last question too, is can you tell me a little bit about the Cambia Foundation? I heard a lot about it. But I don't have a great idea exactly what it is, and Cambia scholars. You mind taking a second?

Alex: Yeah, how are these things related? Are they related?

Randy: Yeah, absolutely. Cambia Health Foundation is a private foundation based in Portland, Oregon that is the foundation of the Cambia Health Solutions, which is a company actually owned by multiple companies, but includes a number of insurers and others.

Randy: And the Cambia Health Foundation funds in several areas. But they have gotten very passionate about palliative care, and have really done most of their palliative care. And they've done that through individual grants, but they've also launched the Sojourns Scholars Leadership Program. Which is really designed to build the palliative care leadership of the future. And this program has been going on for almost a decade, and has actually already built the palliative care leadership of today, and the future.

Randy: The Foundation gave us a grant, which is why my center's named after it. But it also devotes a lot of attention and money to the Sojourns Scholars Leadership Program, which is a wonderful program for present and future leaders in palliative care.

Eric: Which of our listeners should apply for that program?

Randy: Yeah, so that program is very intensely meant to be to cover all the disciplines in palliative care. Physicians, nurses, social workers, spiritual care, hospital administrators, really a very interdisciplinary program.

Randy: It's also meant to cover all kinds of leadership. So it can be research, clinical leadership, education, it really spans the spectrum around building leadership.

Eric: Well Randy, I want to be mindful of time. I want to thank you. But before we leave, Alex, a little bit more It's a Good Life.

Alex: A little bit more here.

Alex: (singing)

Eric: And Randy, a very, very big thank you for joining us on this podcast. I just want to let you know that you have touched so many of us, people that you don't even know or ... like myself included.

Eric: We've been on a podcast together but there are so many connections, secondary connections that I have with you. And it just shows the importance that you have played in building this field, and the expertise.

Eric: And I got to say, building the future leaders of palliative care. So thank you for everything that you have done, and for spending the time with us on today's podcast.

Alex: And for talking on this podcast about serious illness, and living with serious illness, which is a highly emotional subject. And really appreciate you sharing that with our listeners.

Randy: Well, thank you. I really appreciate the opportunity to be on. The opportunity to have this time with you reminds me that it's been a very good life.

Eric: Randy, thank you again. And to all of our listeners, thank you. I think this serves as a reminder: We have to live every day, and it's a good life.

Eric: Thank you Archstone Foundation for your continued support. And everybody, have a very good day. Goodbye.

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