Cancer Topics – Delivering Serious News (Part 2)

ASCO Education

In the second of this two-part ASCO Education Podcast episode, Drs. Stephen Berns (University of Vermont), Tyler Johnson (Stanford Medicine), and Katie Stowers (Oregon Health & Science University) continue their discussion about what it takes to deliver serious news to people with cancer effectively and compassionately.

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TRANSCRIPT

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STEVE BURNS: Hello, and welcome to the second part of ASCO's Education Podcast focused on clinician-patient communication in the context of delivering serious news to patients and families. My name is Steve Burns. I'm an internist, hospice, and palliative care physician and associate professor of medicine at the University of Vermont College of Medicine. Once again, I'm joined by Katie Stowers, a hospice and palliative care physician and assistant professor of medicine at the Oregon Health Science University, and Tyler Johnson, a medical oncologist and clinical assistant professor of medicine at Stanford University.

In our previous episode, we spoke about what constitutes serious news, the best modalities for delivering serious news particularly in the wake of COVID, who might be the best person to deliver it, and the importance of the care team as a whole. We left off on the question, how do we prepare for delivering serious news? Let's continue the conversation.

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TYLER JOHNSON: Katie was talking about how we need to be realistic about the way that a conversation is going to impact us in addition to the way that it's going to impact the patient. And one thing that I have realized is that a headline, for those who maybe haven't had evals of training, is just a concise summary statement of sort of the big picture of what's going on, just like buying a newspaper article.

And what I have recognized is that oftentimes, I have this almost visceral reaction against giving a headline. And if I drill down just a little bit, what I find is I don't want to give the headline because then I'm really going to have to say things the way that they are, right? If I give a five minute disquisition on creatinine and edema and chemotherapy, immunotherapy, therapeutic options and whatever, right? Then, I can just like talk a cloud around things and never actually say what it is that I'm trying to say, which then gives me the advantage of feeling like I said it, but actually sort of knowing that I never actually said it, right?

And so I think the thing that the headline does is it forces me to say the thing. And then once the thing is out in the open, then we can talk about, if necessary and appropriate, some of the other nuances and whatever. But all of that is to say that often, the greatest barrier to doing that is an unwillingness to be real with myself about the information that I'm really trying to convey.

KATIE STOWERS: I think this is another really great opportunity where when partners go in together, it's easier to get into the moment if you get the opportunity. Someone with a little bit of accountability, but also somebody to help you. Maybe you're able to get out the facts and they're able to tie-in the meaning. Or you end up going bigger than your headline and they're able to say, I think what you were trying to say was dah-dah-dah-dah-dah, and help really get back to that core.

STEVE BURNS: It does say that we all, before we share serious news, making sure whoever you're going in with, you're on the same page. And having a pre-meeting is so important. And what I often do with my pre-meetings is I come up with the headline as the group, right? So we're all clear about what is that headline so that when we go in, we can, in some ways, also hold each other accountable for that headline.

KATIE STOWERS: I think also, a little bit of who's going to say it too. Like, is that something that you feel comfortable saying, or would it be easier for somebody else to say? Are there parts of it, and then parts of it that I can do, I think, can be really helpful.

TYLER JOHNSON: Yeah. It's funny, because sometimes, even though I'm pretty tuned into these things and I try really hard to do them well, I still find that there are times as a medical oncologist when the palliative care doctor who is unfailingly ever so nice and gracious about it, ends up being like the real human translator for my medical leads. So I, like, say some word cloud. And then the palliative care doctor, like Katie just said, is like, if I can say that what Dr. Johnson was trying to say right there is something in normal human English speak.

And then, as soon as they do that, I'm like, oh. But that can actually be really helpful. And again, I think it's obviously not meant to slight me. It's not meant as an affront, right? It's just sometimes, it's just kind of hard to quite get there, right, and to quite say the thing. And sometimes, having someone to help. Like, you get 80% of the way there, and then having somebody else get the other 20% is really, really meaningful.

And it also, in a strange way, kind of allows us to share the emotional burden a little bit, right? So that it doesn't feel like, oh my gosh, this is just me saying this thing. There's something about having other members of the team there to kind of hold your arms up as you're doing that that's really meaningful.

KATIE STOWERS: I worry that part of this conversation is saying like, oh. Some people are really good at this. Some people aren't. I don't think that this is a palliative care physician's good the whole time. I think this is a normal human experience. This just happened to me. This week in clinic where my patient was like, you just told me like a five minute story of things I already know. And I still don't know any more information. And I was like, oh, that wasn't really clear at all, was it?

So I mean, I think it's when our nerves pop up. When we are uncertain or unclear about what it is that we want to say or just really nervous about doing it, like, I think this is our normal human default to go back to beating around the bush. But it definitely, as Steve mentioned, is a skill that we can learn and continue to practice. And it's also really helpful to have somebody there who can hold your feet to the fire and help you in the moment.

STEVE BURNS: Katie, I'm so glad you mentioned that. I just think about even for us as palliative care physicians, who do serious illness conversations all the time, catching ourselves doing some things because we are being affected by the conversation and our well-being. I remember a couple of weeks ago, how hard it was for me to say dying and death. And I know. I've been teaching my learners say the D word. It's OK. It's direct. It's straightforward. And then all of a sudden, I was in the middle of the conversation and I noticed I was struggling saying death.

And so again, just to say we are human, that these conversations affect us. And having team support is so helpful in the moment. Because the chaplain who I was with said, what we're saying is we're worried that she's dying. And I was like, oh thank god. She said it.

TYLER JOHNSON: And the other thing too, right, is that I think it's helpful in a sense to recognize that the difficulty with giving a headline or with saying death or dying or whatever is an impulse borne of human compassion. I mean, it's not because we're bad people. It's because we have good hearts and because short of maybe clergy members, there's really nobody else in the way that human ecosystems are set up that does this, right? It's just a hard thing to do.

And recognizing that it's hard and recognizing that we ourselves are having a hard time with it, is not some failing of doctoring. I would say that actually, this is one of those weird instances where having that consistent struggle, that should be a tension that should define part of how we doctor. Because if the tension goes away, that's actually more worrisome than if the tension continues to be there, though we have to find productive ways to engage with it.

STEVE BURNS: Yeah. We did a study in 2016, the Vermont Hospice Study, and similar to actually, what Cambia Health Foundation found, why people don't engage in serious illness conversations. And one of the biggest reasons was taking away hope or hurting people's feelings and in causing emotional distress.

We also know with the literature that most patients, up to like 90%, 95%, want to know the truth because it helps them better make decisions. And I think we can deliver prognosis in a compassionate way. And I think practicing that in the kind and caring way that's person-centered, asking them, what do you know? Is it all right if we talk about this right now? Delivering in a headline and responding to emotion can help make that a more compassionate conversation. Although it still doesn't take away the human feeling that I'm worried I'm going to hurt someone in this conversation.

TYLER JOHNSON: Almost always in my experience, patients who have metastatic disease, or for some other reason, disease that is known from the get-go to be incurable, in one of our first discussions, they will ask some version of the question of how long do I have, or what are things going to look like going down the road?

There's good evidence to demonstrate, and it has also been my personal experience, that we're really bad at answering that question at the time of diagnosis, right? Because we don't know anything about the biology of the tumor, the response of chemotherapy, what the molecular markers are. There's a whole host of things that just make it so we almost always cannot answer the question accurately even if we try.

And so what I will usually do is I will tell patients, I'll say, when they ask some version of that question, I'll say, look. I need you to know that, first of all, I can't answer that question right now. I'm not obfuscating. It's just, I would be lying if I gave you an answer because we just don't know. But I want to let you know that what is true is that I can usually tell when things are starting to go in the wrong direction.

And unless you ask me specifically to do otherwise, I promise you, the patient, that as soon as I recognize that things are heading in a direction that I'm concerned about, I will tell you that in so many words so that you understand what I'm talking about. And then we will have a discussion about where to go from there.

And then, when we get to that point, whether it's six weeks later or six months later, or sometimes six years later, I will say-- because I do this with all my patients-- I'll say, do you remember when I made you that promise way back when or a few months ago, whatever it is? And then I'll say, I hope that I'm wrong here. But I'm concerned that we may now be in that place. And I want to tell you why, and then I want to talk about where to go from there. Because that then situates this difficult discussion in the context of this relationship of trust that we've been building over however long I've known the patient. And I have found that that provides a trusting context within which to have the more difficult conversation that has been really helpful.

STEVE BURNS: Noticing the time, I'm curious, how does the task of delivering bad news affect your own well-being?

TYLER JOHNSON: Just to remind people, we said this before, but I just think it's important to recognize that this being a heavy thing is normal. And recognizing that is normal and that it really is-- I mean, there's some degree to which you can do this well and that will lighten the burden to some degree. But you have to make sure that you're filling your own reservoir, right? You can't pour empathy out of an empty reservoir. And so I think you have to make sure that you're filling that in whatever the ways are that you do.

KATIE STOWERS: I just think I was thinking about that too, Steve. One other thing that I wanted to build off of, this fear and this worry that we bring to these conversations, that I'm going to send them into a tailspin of depression. Or I'm going to take away all of their hope. I think there is the other part of this that I get to see as a palliative care physician, which is the high degrees of distress that often come from not knowing this information, that's really helpful in preparing and planning for the future and almost this sense of relief.

Even when it's unfavorable, even when it's not what they wanted to hear, there's a relief in knowing and being able to do something with it. So that limbo and uncertainty. the idea that something terrible is out there or they can't prepare for it can be really distressing. And so to some degree, we're helping to heal by being able to move into some planning.

STEVE BURNS: Yeah, I totally agree that it's such an important thing to minimize the stress of uncertainty. And the other piece that I think about is these are really sacred moments where we can really connect with our patients, share the news, find out how they're doing with it, and then find out what really matters in their lives. I think that really helps be my north star when it comes to continuing the care that I'll provide for them in their families.

TYLER JOHNSON: Yeah. You know, there's a really harrowing, in some ways, but beautiful moment. And many of you will probably have read the book Just Mercy, which is written by this lawyer who's fighting for justice, particularly racial justice, for people who have been unfairly treated by the justice system in the deep South. And there's this moment towards the end of the book where a person who he had been fighting for who was on death row has just finally been executed. And he goes home and sort of just collapses crying. And then he writes really beautifully about how this moment of sort of shared vulnerability, where he kind of recognized that the reason that this was so hard was because even though he was vulnerable and broken in different ways than the person who had just been executed, it was still sort of a shared sense of vulnerability. It was what made his work hard, but also what made his work beautiful.

And I think that in a similar fashion, when we have these really difficult discussions, I think that while there is a real moral weight and difficulty to it, there is also just as you said, they also end up being some of the most meaningful, memorable, and beautiful moments.

STEVE BURNS: As a clinician, what have you learned over the years regarding communication with patients that may help others navigate scenarios where they can deliver serious news? I was just on service with a trainee. The team was delivering serious news. It was serious news around lung cancer. And the team's like, this patient's just not getting it. And we tried to explain it over and over again. And they're not getting it. And then my trainee went in and attempted and said, yes. Here's your diagnosis. We're concerned it's incurable. And you likely will die in the next year or so. And the patient said, no. I'll be fine.

So we hypothesized before going in the room with me, like, what it would be. And what it came out is maybe it's not they're not understanding it. Maybe it's emotion. So we went back in. And sure enough, my trainee did wonderful and responded to emotion and said. It must be really hard hearing this news. And the patient immediately got sad and said, I'm really scared.

And we unpacked that a little bit. And when we left the room, he said to me, yeah. That was emotion. He totally gets it. He's just upset. And so I just want to reiterate the idea, sometimes, it's not that they're not understanding it. It's that it's a lot to process. And there's a lot of feelings behind it.

KATIE STOWERS: Building on that, one of the things that I see happen a lot around emotion is the health system is not set for people to process and to come to terms with these hugely life things and life-altering things. There's not time for people to process what this means for their life to term and process that emotion. And we're constantly pushing. And sometimes it almost could feel like badgering, really trying to get a decision to come where, with some degree of autonomy and some degree of time, allowing them to really process. People, a lot of times, get to where they need to go. But it's a process of really being able to deal with.

STEVE BURNS: Yeah.

TYLER JOHNSON: Yeah, the only thing that I will add is that these conversations, when they need to happen, work best when I have been mindful of laying the groundwork for the conversation over the entire arc of the illness. Rather than thinking of, oh, this is the thing that I do right when someone is getting close to dying.

Because if you've never laid the groundwork and then you try to have the discussion, then when the person is really, really sick and in the hospital or whatever, of course, there's still a better and a worse way to do that. But even the best conversation if it's that isolated incident, in my experience, is nowhere near as good as if we have been transparent and building trust and building a sort of a shared vocabulary with the patient over the course of the illness. So that then, when they get to having to have quote, "the discussion" unquote, it becomes just one part of this longer chain rather than an isolated happening.

And that really gets to what I was saying earlier about the promise that I make my patients when they first ask that sort of big picture question. That even though I'm not in a good place to talk about it right then, that I promise them that when it comes time, I will talk with them about that with candor. That makes an enormous amount of difference. I know I had a trainee who was with me one time who was a continuity fellow with me and had heard me make that promise to a number of patients and the first time he was with that same patient when it came time to have that discussion.

And I said, well, you remember that promise that I made the first time I met you? And he could, for the first time, see all of the dots connect over the arc of the illness. It was like, whoa. Like, there's just really this power that comes. But you have to have been building it piece by piece over time.

STEVE BURNS: I think both of you are highlighting for me two reminders that I want to keep in mind every day when I'm delivering serious news. One is sort of having an agenda but being flexible with my agenda. And I remember during my training, one of my mentors said, keep your agenda out the door. Don't force your agenda on the patient, as Katie mentioned.

And yet, have a plan and still go in with that plan. The other piece that Tyler, you're reminding me of, is the importance of the arc of the conversation and how continuity. Because we build off of conversations from visit to visit. And yet, sometimes, someone else is taking over for us or they end up in a hospital or they end up in a nursing home. And it reminds me how important documentation is to convey what happened in that encounter. What was said, what was the headline that was shared, how did the patient respond, and then what was the plan. And far too often, we usually just write the results of the conversation.

TYLER JOHNSON: Yeah. One last thing that I want to put a specific plug in that I have found to be enormously important, I think all of us would agree that amidst all the conversations that we might have as part of taking care of a patient, this is the one where shared decision-making matters the most. And yet, if you ask most people, even experienced doctors, how do you engage in shared decision-making around this kind of question? That's really tricky, right? Because I think what often ends up happening is that we either default to being very prescriptive where we go in and say, well, you should do this or shouldn't do this. Or we default to being waiters with the menu. Like, well. OK, so would you like some intubation on the side of CPR?

And so, I think that both of those models are equally problematic and that the tool, the specific tool that has helped me really learn about how to do shared decision-making and even provides the specific words, is what's called the Serious Illness Conversation Guide from the Ariadne group at Harvard, which is the group founded by Atul Gawande and his colleagues.

And I think that that gives a very brief script which, I mean, you can literally almost just read. You can get a little card that you can carry in your pocket or whatever. And it gives-- and the entire conversation in most cases, takes maybe 10 or 12 minutes. But it gives you the point-by-point things to say and really allows you to meaningfully engage in shared decision-making so that you spend the first half of the conversation listening to the patient's priorities and values, and then the last maybe third of the conversation, using that to make meaningful recommendations. And so again, it's called the Serious Illness Conversation Guide. And I would really recommend to listeners that they look it up.

STEVE BURNS: That's a really great segue to what training and resources are there for clinicians and oncology trainees to improve their communication skills. The three resources that I can think about are Vital Talk, the Serious Illness Conversation Program out of Harvard and Ariadne Labs, and then they have a rich program which is from the American Academy of Communication of Health Care. All three are different ways of approaching communication skills training.

I always think about the Serious Illness Conversation Programs about raising the floor to make sure that we hit the basics. And then Vital Talk is if you want to flex your muscles or flex your skills when it comes to how do I respond to really intense emotion, or if someone's avoiding the conversation, what do I do? They train with raising the ceiling or their goals to raise the ceiling.

And Vital Talk actually came out of oncology conversations first with OncoTalk almost 20 years ago. And really thinking about not didactic-based, but practice and skills-based training. And I certainly have found it rewarding and life-changing for me, where I could actually label the things that I do every day, give myself some feedback, and then teach my trainees.

TYLER JOHNSON: And I will just add, as a medical oncologist who has both taken the Vital Talk course and now is trained and teaching Vital Talk courses, that this is not just for palliative care doctors. And I think that it is particularly-- I mean, you may not have the interest or passion to want to become a Vital Talk trainer, which is understandable if you're a medical oncologist, either a busy practice or a heavy research portfolio.

But it's just to say that they offer 1 and 2 and various iterations of courses, depending on how intensely you want to study these things. But it's just to say that the skills that they teach are concrete. This is not some sort of head in the clouds theoretical exercise. I mean, they're taught very concrete skills that you can wake up the next morning and employ you in your practice. And that I think to a point that is often counterintuitive to us, I think that we are almost afraid, as oncologists, to know about this because we think, oh my gosh. I didn't have time to engage in these long discussions. There's no way.

But my experience has actually been what this does at the end, is it actually makes you more efficient. I know that seems counterintuitive, but we spend so much time sort of beating around the bush around this stuff that we actually end up making ourselves take longer. And having really concrete skills for how to have these discussions can actually make your practice more efficient for things that otherwise can really eat up a lot of time.

KATIE STOWERS: I do a lot of teaching in Vital Talk incentives. It sounds like both of you do as well. But the piece of feedback that I hear from trainees that come take courses-- and I do a lot with oncologists and oncology fellows as well-- is oh, these are the things that I've seen in conversations at work that I never had a name for. Like, you're putting a name on something that I've seen. And maybe I've done a couple of times, but I didn't know that I was doing it this way. And especially for my colleagues who are practicing providers who teach others, they really love having a name and a framework for being able to teach these skills to others.

It's not some magic fairy dust that you either have or you don't. It's actually, here's a skill that I can pass on to you and you can practice. And I can watch for, and we can have some feedback about. And I have seen that being a really enjoyable part of doing this framework. We have that, right, for almost every other part of medicine. But because communication is something that's so innate and personal, that hasn't always been the case around communication. And so I really love that about Vital Talk, that they've taken these pieces and put names on them.

Because this is how you give communication clearly, information clearly, is the headline. This is how you show someone that you care about them. These are empathic statements. And that's something that we can use as a third language when we're going into team meetings together or when we're teaching a trainee.

STEVE BURNS: It's one of the most important skills that we do every day, and probably the most important procedure that we do on a regular basis in all of our fields.

TYLER JOHNSON: And I think you can tell from the way that the three of us have discussed delivering a headline during this podcast, that this is not like a thing that we learned seven years ago and then just sort of left in a drawer somewhere, right? Like, this is something that we're actively thinking about as we actually take care of patients every day, which is to say that it really is very applicable.

STEVE BURNS: I feel like that's the time for today. This has been a really great conversation. Thanks so much for both of your insights and participation in this episode of the ASCO Educational Podcast.

KATIE STOWERS: Thanks for inviting us. It's been great to be here.

TYLER JOHNSON: Thanks so much. It's been a pleasure.

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