Dr. James Tulsky is passionate about enhancing communication between clinicians and patients. Why are words so vital in the medical field? What do patients and families need most during critical conversations? And what are the key moments where navigating communication effectively can make all the difference? (Spoiler: delivering difficult diagnoses, discussing changes in care or prognosis, and navigating end-of-life conversations.) Dr. Tulsky, alongside Dr. Anthony Back and Dr. Robert Arnold, founded the nonprofit VitalTalk ⁠https://www.vitaltalk.org/⁠ to provide clinicians with practical tools and training to navigate challenging conversations with empathy and clarity. Reflecting on what inspired him to focus on this area – and to go on to train tens of thousands of others in the medical field – Dr. Tulsky shares, “It hit me like a lightning bolt—the power of words.”

Transcript:

Diane Hullet: Hi, I’m Diane Hullet and you’re listening to the best life, best death podcast. Today. I’ve got a guest all the way from Boston. Dr. James Tulsky. Welcome Dr. Tulsky. 

Dr James Tulsky: Hi, it’s good to be here. 

Diane Hullet: Yeah, I appreciate your time. I, you know, we got connected through Dr. Matthew Tyler and Dr. Tyler. Known as how to train your doctor on Instagram and so on is a palliative care doc in Chicago Who really believes in the value and the power of conversations between doctors and their patients and the two times I’ve talked to him He always brings up vital talk.

So I said I gotta find out more about vital talk So you are one of the key people founders of vital talk and tell us what this is vital talk 

Dr James Tulsky: Sure. So Vital Talk is a nonprofit that is devoted to ensuring that patients receive care that matters what reflects what is most important to them. And we do that through clinician training in communication skills.

And we have, you know, Train tens of thousands of clinicians around the world in skills that can be used with patients toward the end of life in decision making about end of life and those sorts of things, everything really starting with delivering serious news to navigating tough decisions that might happen along the course of illness.

Diane Hullet: I, I just think that’s such a powerful and important skill to have. And it, I, I guess I always had the impression that like a doctor was either born with it or they didn’t have it and it was sort of one or the other, but your, your focus is really to say, this is trainable. 

Dr James Tulsky: Yeah, so communication is not like you’re hot or you’re not, which is, you know, which is sort of suggesting in fact these are skills that are absolutely learnable.

Look, there’s no question that some people enter the professions more or less talented or more or less innately skilled. It’s like an athlete, it’s like a musician, it’s like anything else. People. Sort of naturally have a sense of doing some things, you know, better or worse. That said, everybody can move the needle.

And in fact, people can move the needle quite a bit. And so we have lots of research on that. And, you know, vital talk came out of an evidence based approach in which we did lots of research studying how communication works and how to teach communication. And what we’ve shown is that after training clinicians will do many more of the kinds of behaviors that we wish they would do.

So it absolutely is. Can you talk? 

Diane Hullet: That’s fantastic. Does vital talk work mostly with like big medical systems or individual practitioners or what’s out there? 

Dr James Tulsky: Yes. How we work with everybody. So we started primarily by teaching clinicians in practice, and it was sort of focused on the individuals.

 We really started in oncology. We started even before VitalTalk incorporated as its own non profit organization. We had a project called Oncotalk which was funded by the National Cancer Institute. And we were doing this in various permutations for about 10 years. And We trained lots and lots of oncology fellows, as well as lots of oncology faculty in these skills, as well as how to teach these skills. 

And then we realized that NIH funding was probably going to end, but also that we had a much broader audience. And in the meantime, there had been other options from Oncotalk. People had developed Geritalk, people had developed Cardiotalk, Nephrotalk, these, you know, looking at different areas.

And so we started doing vital talk in about 2012 and our focus, like I said, was primarily on the individuals and most of the people that came were from academic medical centers. So most of these people were working in academic environments. They wanted to learn for themselves. And then what we did was we were training them.

How to teach other people these skills. So we teach teaching and that started happening, you know, in these institutions, people would go back and then they would run courses for their medical students, for their residents, for other attendings, and it was done on a very sort of individual basis.

However, over time, we’ve come to appreciate that health care is really organized in health systems at the very least by hospitals, but these are being incorporated now more and more into larger health systems. So, to the extent possible, we are now reaching out. To health systems more broadly in some cases, very large health systems.

We work with the VA health care. We’ve worked with Kaiser. We’ve worked with, you know other large systems in the intermountain states and so forth. And so that is 1 way we do we approach. And also we have different tools. that we bring to these hospitals and health systems. Some are, you know, training the clinicians directly.

And we also have a lot of online tools now that we bring to them and that they can use. So we kind of do it wherever it happens, but increasingly we’re moving into the space of really trying to work more directly with hospitals and health systems. 

Diane Hullet: How did you yourself get into the health system? 

Dr James Tulsky: You mean like, how did I get into this whole kind of, this line of work?

Diane Hullet: What were you doing when you were 18 that you started doing this? 

Dr James Tulsky: Oh God, this probably had to do with what I was doing when I was five. But so there’s, there’s like the very long story. There’s a medium story. There’s a short story. I’ll try to give you something in between. 

Diane Hullet: Let’s do the medium story.

Was this like a story on your stuffed animals? So 

Dr James Tulsky: Personally, I grew up in a family where both my parents were physicians and my mother, it’s a long story. My mother was not practicing and my father was, he was a solo practice OBGYN. And so he was very much of a storyteller. She sort of lived vicariously through his practice because she had stopped out of medicine.

And so. Every night, our dinner table conversation was my father telling stories of what happened in the office and he would come home and he would, and, you know, we would sit around dinner and he would start by giving literally a medical history. This is before HIPAA. This is a total violation of patient confidentiality.

I get it. It was also the 1960s and 70s. And so. He would say, you know, today I saw Mrs. So and so. She’s a 47 year old woman, grabbing a three, pair of two, I did a hysterectomy on her, blah, blah, blah. He would kind of give her a little medical history. But that would always be the preamble to a story. And there was something that was going on in her life.

There was something that came up in the visit. And he would talk about this. And it, I grew up understanding that people were much more than their medical problems, and that they were really all about the stories that they held, and that that was actually the lovely part about medicine. So when I ended up becoming a physician myself, I found that I was immediately gravitated toward this piece of the work of Hawking.

And then I found something that, you know, and this is probably the very long story, but I found that For some reason, I was comfortable being in the rooms that nobody else wanted to be in. Even more than that, I actually wanted to be in the rooms that everybody else wanted to walk out of. And maybe that was because of how I was raised, maybe it was because of some other things, but, you know, these difficult conversations, delivering serious news, talking about choices, talking about end of life, were things that I found Gone to and I found that I personally could, I thought that I could add value and that was a unique value out of line.

The truth is when I was doing this, I didn’t, when I started, I didn’t have a clue as to what I was doing. I didn’t, and I was stumbling along, but I kind of thought maybe I’m stumbling along better than some of the people around me. And so I started doing that and it was then, and so that’s kind of how it was in medical school.

And I remember I asked to tell one of our patients. the news about his lymphoma. I asked to be their president. So I did these things. And then when I was a senior resident I trained in San Francisco at the University of California, San Francisco, UCSF, and I was rotating at San Francisco General Hospital, a large city hospital.

And I was, that evening I was the ICU resident, meaning that I sort of oversaw, from a resident perspective, all the care in the intensive care unit. And I was called down to the emergency department to admit a patient. And the patient was a fairly elderly gentleman with widely metastatic widespread lung cancer who was at home, was dying.

There were no more cancer directed therapies available. He knew that his wife knew that, but he became acutely short of breath when he was at home. His wife did the only thing she knew how to do because they hadn’t yet arranged hospice or anything like that. And so she called So 9 1 1 delivers him to the hospital.

Here’s this gentleman, an extremist, and he ends up getting intubated and put on a breathing machine, a mechanical ventilator. And I come down to admit him to the ICU. And this is crazy because this is not the ways someone like this should die. We, this trajectory was clearly well known, but I took care of him.

I brought him up to the ICU. And began to talk to the wife and try to learn what was going on. And what had happened was, she had shown up in the emergency department, and the attending physician there had asked her, Do you want us to do everything for your husband? And there is only one answer to that question for a loving spouse, which is yes.

And so, what she didn’t understand what everything meant, in his And so that’s what led to all of this. So we figured out that this was not within his goals of care. We had a conversation. We waited until his son was able to come to the hospital. And then later that evening, we withdrew support as peacefully as we could.

And he passed away, but. It hit me like a lightning about the power of words that it was the way that that person had framed the conversation that drove the care and to his credit that attending physician thought he was offering a choice. But in fact, his words constrained all choices, so it got me very interested in this whole idea of how we communicate.

And then when I started learning how to do research as a fellow the next year, and then thereafter, I started to basically devoted my career to figuring out, how do we talk to patients? What do we actually do and how can we improve? 

Diane Hullet: How do we talk to patients and what do they hear? Because it’s almost like swimming in two completely different pools of water.

So the attending physician in that lightning bolt moment thought he was saying one thing and the wife understood it to be a totally different one. I’m so struck how often these conversations have these multiple layers and they’re one side is the physician and the medical team. One side is the family.

And the family has, you know, whatever, six different points of view and conflicting feelings. And yes, I want you to do everything. And I don’t want him to suffer. And what does suffering mean to us? I mean, it’s so fraught and so rich. Oh 

Dr James Tulsky: yeah. Well, you know, it’s interesting when you said what, what they hear and what this what’s told, I will frequently ask patients, you know, what have you taken away from your conversations with your Oncologist, you know, rather than what has the oncologist told you.

Diane Hullet: Yes. 

Dr James Tulsky: I mean, and in either case, and even if I were to ask what have they told you, I still might hear something that is different than what the oncologist thought that he or she told them. But by asking what have you taken away, it’s really what, what do you think is going on here after you’ve heard whatever it was that was said to you?

Diane Hullet: Yeah, yeah. Wow. It’s so fabulous that this all came out of these conversations, like you said, completely non HIPAA compliant conversations about the kitchen table as a kid that were the stories of people. And it sounds like that’s what you really connect with and you found a way to bring that into your work as a doctor.

How many people are doing this with you at Vital Talk? 

Dr James Tulsky: So at Viral Talk, we have first of all, we have a staff. We have a CEO, Lindsay Seabrook with a fabulous staff. I think we’re now at about 10 or 12 people. Well, we also have a wonderful board and we have our founders. I should just mention Bob Arnold and Tony Buck and other people who’ve been involved with the project for a long time.

What we really have though is an amazing faculty that’s all over in the world. And so we’ve trained People who then have become outstanding educators and facilitators themselves who then teach this work. So I think we have, and we have different levels of faculty. We have, I don’t know, maybe 25 what we call distinguished faculty.

We then have another probably 50 or 75 senior faculty. And then we’ve got, oh, my God, close to 1000. regular faculty who teach all over and we have directly trained tens of thousands of people and You know indirectly far far more than that. So there are many many people out there doing this. We still you know, haven’t by any stretch hit everyone But but we’re getting there, you know i’ve been involved with a project So I’m at Dana Farber Cancer Institute, and we are one of the members of something called the Alliance of Dedicated Cancer Centers, which are 10 of the large, freestanding named cancer centers, places like Memorial Sloan Kettering and MD Anderson and us, of course, and Fred Hutch and Washington well known cancer centers.

And this organization has actually developed a program over the last several years where all of these cancer centers are training their oncology teams in communication. And about out of the 10, I think 6 out of the 10 are using VitalTalk, are using other tools and approaches, but they’re very similar.

And so this is really consequential because each of these places has taught. Anywhere between 50 and 100 percent of their clinicians. in these skills. So we now are actually getting it out there. You know, a lot of people who are doing direct care with patients are getting trained. 

Diane Hullet: Which is just phenomenal from a patient point of view, right?

That I can know that my doctor has skills to bring to these really complex Absolutely making points. And I think it’s interesting that you said it’s everything from breaking news to decision making points to end of life. Is there more you can say about those decision point conversations? Those seem so vital.

Great work. 

Dr James Tulsky: Yeah. So, you know, we would call those goals of care conversations. 

Diane Hullet: Do, do people know what that means? Yeah, 

Dr James Tulsky: that’s a good question. So there’s a lot of languages thrown around out there. And just in case you ever hear it. The sort of the gold standard term is a goals of care conversation. And the idea is we are trying to identify what are the patient’s goals, what are their values, what’s most important to them.

And then when we can elicit that and we can put it down on paper and we can all know it, we can then do our best to match the care you receive to help achieve those goals. That’s the whole thing. It’s like, can we create a care plan that matches what’s most important to you? Because what’s most important to you is not what’s most important.

To somebody else down the street. So that’s a goals of care conversation. You will also hear people refer to this as a serious illness conversation or an SIC. That’s a very commonly used term as well. It’s just good to know the difference, but it’s basically the same thing. The other people will also call it an advanced care planning conversation.

That term is falling a touch out of vogue for reasons I won’t get into, but, but it is another term that you’ll frequently. So I think. These conversations, goals of care, serious illness, whatever you wanna call them, you know, can sort of be demarcated as early and late. Hmm. And you know, early goals of care conversations are, I think, are valuable anytime when somebody is living with a serious illness.

And when I say a serious illness, I mean a, you know, an illness that you are unlikely to be cured from and that will likely be. Either the cause of or attributing the cause of your death at some point in the not very distant future. People with serious illnesses may live with those illnesses for five, seven, even 10 years, or they could be looking at something that’s going to take their life in several months.

So those serious illnesses span a wide range. But I think when you’re living with a serious illness where oftentimes your treatment decisions are going to involve trade offs, burdens versus benefits. It’s important to be clear about what’s most important in your goals, so that the care you get at any point in that trajectory matches what’s important to you.

So I think that, so for example, when I meet, I work at Cancer Institute, I meet patients at all different stages of their cancer trajectory. But even patients who are, you know, relatively early in a disease that they may live for years with I will start these questions and ask them, you know, first of all, what’s your understanding of your illness?

What’s your sense of what this is going to mean for your future? What are your hopes? What are your worries? What’s most important to you? I want to get that all out now. So I have some sense of who this person is. And then we can work with that over time. There will then be points in, you know, that will, will hit where there are kind of transition notes.

where treatment choice has to be made. For example, that is the cancer has progressed through a particular regimen. And there might be some choices of our regimens or, or even whether to bother treating at all. And at each of those points, it’s useful to revisit those same goals and figure out where the person is now and what is the most appropriate care.

So I think it’s all along the way. Now, what’ll then often happen is you will get further along to a point where Really, the choices are quite limited in terms of disease directed therapy, and there might still be some choices that might be very experimental. They might be sort of Hail Mary kind of approaches where, you know, they’re very unlikely to work.

And different people are going to have different feelings about how they want to approach that. And that’s where, you know, we might be making decisions about, do I want to continue with any sort of therapy at all? Do I want to go completely to a palliative approach, which may include hospice care? So those decisions also are made.

All of these decisions, I feel, are best made in the moment. The reason advanced care planning is, A little bit of a problem is because it’s very hard to really know how you’re going to feel in the future when something comes up. So I like to kind of at each point away along the way, get to know the person as well as possible, learn where they’re at, do the best for decisions in that moment and use that information.

You know, take that into account when future decisions come up, but when future decisions come up, hopefully we can talk about them more then and make another decision that’s most important. 

Diane Hullet: I appreciate the framing that you started this with. This idea that Serious illness is serious illness, and it is probably what, as you said, you’re going to die from it, or it will attribute to your death down the road.

And that seems like the beginning juncture point that’s so difficult for doctors and patients to really have a conversation. There’s so much hope embedded for patients and so much denial embedded for all of us that that just strikes me as really critical. I don’t know. I’m one of these people. I don’t mind talking about mortality.

I don’t mind having a conversation about it, but boy, a lot of people really don’t. And if I was faced with a terminal illness, maybe I’d feel differently. Maybe I wouldn’t want to talk about it at that point. You know, it would feel more in my face. 

Dr James Tulsky: Yeah, I mean, people are all over the map on this one. And there are people, you know, patients I see, families I see that are like you and want to be very direct and are very open.

And they’re the easy ones. You know more many more people, honestly, in my experience, at least are at least somewhat avoidant or ambivalent. You know, we like to say that and actually some of the data plays out this way, you know, a third of people. Like very comfortable talking about it, want to go there, a third of people, they just can’t, they just can’t touch it.

And then a third of people are probably pretty ambivalent. And then I think our job with clinicians is to work with that ambivalence, try to help people figure that out, and then find out when they’re ready to talk and have those conversations. Because the other thing is you don’t want to like bombard people and, and, and also they need to have the conversations they’re ready to have.

So, you know, we are, we sometimes use a metaphor, like you can open the box. When you want to talk about these, the things that might be important, and then you can also close that box up, put it on the shelf and let it sit there for a while until we absolutely need to bring it open. 

Diane Hullet: Well, I think it’s so powerful that you, you and your team, this big team at VitalTalk are bringing Tools to doctors so that they can help people open that box and open it, put it, close it, do whatever they need to do with it, but find a way in that’s heartfelt and compassionate and truly meaningful for the way these conversations go.

You know, I just came back from the EndWell conference. This is we’re recording in November of 2024. And the Endwell conference, the opening speaker was Roshi Joan Halifax. And she, boy, what a, what, one of the truly great teachers of our time. And she said, compassion is a triple win. Compassion is a win for the person delivering it.

Compassion is a win for the person receiving it. And it’s a win for everybody around. And I thought that was such a great way to say it. 

Dr James Tulsky: Yeah, it’s beautiful. Very beautiful. 

Diane Hullet: Yeah, you really, you’re talking about how can you have triple wins for doctors and patients and families and everyone involved in the system so that these conversations go as good as they can and address the goals of care of an individual, which, as, as you said, very widely from do everything possible to if I, I’m not if my body’s not the way it used to be.

I don’t want to be here. Yeah. 

Dr James Tulsky: Yeah. Yeah. And you know, one thing I just want to say is, you know, you, you’ve been using the term doctors. I’ve been using the term clinicians. Yeah. That this is not just about doctors. This, there are lots of people in the healthcare system who Contribute to these decisions that help people along this journey. 

Certainly there are, you know, in many places, nurse practitioners, physician assistants are intimately involved in a lot of the care and oftentimes are the ones having conversations with patients about many of these things. social workers, others. So I think it’s, it’s, it’s important that we’re, you know, really recognizing it too, that we get all those people on board using the same language and being able to you know, help.

Yeah. 

Diane Hullet: I’m so glad you clarified that because you’re right. I’m tossing around doctors as though it’s just that they’re the only ones. And really it’s this broad range of clinicians who interact with patients and the words they use matter. Yeah. Well, Dr. Tulsky, I appreciate your time so much. This has been great.

And may, you know how do lay people explain this service to their providers? Are they able to say, Hey, I heard about this great thing called vital talk. 

Dr James Tulsky: You know, I think that that might backfire. Cause that’s a little bit like say, you know, I want you to go back and do a refresher at medical school.

But I think the thing I would say for patients. Is to do, you know, your own work as much as possible to explore what’s most important to you. There are resources online and all sorts of places where you can help clarify some of these questions for yourself. But I think it’s important to be prepared to ask about and talk about several things.

First of all, how much do you want to know about where things are going? How comfortable are you with that? And then if that’s something that is important to you to, Ask directly about prognosis and understanding that clinicians are always going to hedge because they almost never know for sure, but you can ask for a range.

Are we talking weeks? Are we talking months? Are we talking years? I need to have some sense for my own planning because I so often I find that people are way discordant. From where their clinicians are around what their expectation is, and it’s only because they’ve never had the conversation. So I think patients really need to think about that.

I mean, and then decide, can I, can I handle that information if I hear it? Do I want to hear it? And then ask that question directly. I think most clinicians will be open to talking about it. The second thing is, If your time is potentially limited, and limited might mean weeks, but it might mean years.

But if your time is limited, what’s most important to you? That’s the question you have to explore. What are you hoping for, and then what are you worried about? And if you can write those things down and if you can actually express those to your clinician, hopefully they’ve been trained to actually ask about those things, but if they haven’t, hopefully they’ll hear them from you.

And then that, I think, will enrich your relationship with that person, and will help you both make better decisions. very much. 

Diane Hullet: Ah, so this is, this is my favorite thing that I say over and over again. It’s like, have the conversation, have the conversation. And sometimes I say having the conversation begins with having it with yourself.

Have the conversation in your head by writing, by looking at things that are resources, have the conversation with your loved one, whether that’s a partner, a dear friend, your children, grandchildren, whoever can do this with you and then have the conversation with your clinicians. Yeah. Yeah, super. Well, I appreciate your time so much and just really love the work that Vital Talk is doing out there in the world to really impact the way these conversations go.

And so maybe we can all have these lightning bolt moments that are really positive in terms of feeling like we had a good conversation. We were understood and we understand what our options are moving forward in the medical system, whatever has brought us there. 

Dr James Tulsky: That’s great. Thank you so much for this opportunity.

Diane Hullet: Thank you so much. You’ve been listening to the best life, best death podcast. And as always, you can find out more about the work I do at best life, best death. com. And we should say your website for vital talk 

Dr James Tulsky: vital talk. org. 

Diane Hullet: Vital talk.org, a nonprofit. Thanks again for listening. Have a great day.