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Medical communication is tough, although fundamentally at its most basic unit of delivery, it includes really only three steps. First, a clinician’s thoughts must be encoded into words, then transmitted often via sounds, and finally decoded back to thoughts by a patient or family member. Simple, right? Not so much, as each one of these steps is fraught with miscommunication. 

For example, a surgeon may want to convey that all visible tumors were removed during surgery, but transmits that message to the patient by saying “we got it all” only to have the patient hear an entirely different message that the cancer is gone and they are now cancer free.

On today’s podcast we talk with three communication experts, Abby Rosenberg, Don Sullivan, and Shunichi Nakagawa about the concept of miscommunication, including examples of it and ways we can mitigate this issue.

This podcast was inspired by Abby and Don’s recent JAMA Oncology paper titled Miscommunication in Cancer Care—Do You Hear What I Hear?  We also ask Shunichi Nakagawa about some of the amazing communication pearls he posts on his Twitter account (don’t tell me to call it X). 

Lastly, we also plan to have two more podcasts coming up on communication, one on the language of life sustaining treatments and one on surgical communication, so stay tuned!


Note: For more reading on this subject, check out these links:







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

Alex: This is Alex Smith.

Eric: And, Alex, I want to get this right, there should be no miscommunication about this, who’s on our podcast today?

Alex: Very good. We have Don Sullivan, who’s associate Professor of Medicine in Pulmonary and Critical Care at Oregon Health Sciences University in Portland, Oregon. Don, welcome to GeriPal.

Don: Thanks for having me,

Alex: And we’re delighted to welcome back Abby Rosenberg, who’s Chief of Pediatric Palliative Care at Dana-Farber Cancer Institute and Director of Palliative Care at Boston Children’s Hospital and Associate Professor of Pediatrics at Harvard Medical School in Boston. Welcome back, Abby.

Abby: Thank you. So glad to be here.

Alex: And we’re also delighted to welcome back Shunichi Nakagawa, who’s Associate Professor of Medicine and Director of Inpatient Palliative Care at Columbia University Medical Center. Shunichi, welcome back to GeriPal.

Shunichi: Thank you for having me.

Eric: Well, we’ve got a great podcast that we’re going to be talking about miscommunication in medicine, in surgical settings, in a lot of different settings, but before we go into that topic, I think somebody has a song request for Alex.

Don: I do. Hello, goodbye by the Beatles.

Eric: Why did you pick that, Don?

Don: Well, it’s a song about duality, balancing the positives and negatives, and I think it’s an important concept when you talk about communication.

Alex: That’s great. All right, here’s a little.

Don: My daughters love it too.

Alex: (Singing).

Eric: That was fabulous

Alex: Fun song. Thank you, Don.

Eric: How old are your daughters, Don?

Don: Eight and four.

Eric: Yeah? Is there a reason they love it, besides the obvious parental-child-

Don: It’s a great children’s song. It’s easy to hear the words and pronounce them.

Eric: Let’s dive into this topic. Before we talk about miscommunication, would love to hear briefly from each of you, how or why did you get interested in this topic at all just around patient communication, patient-doctor communication, patient-provider communication.

Don, you started us off with a song, what got you interested in this?

Don: Yeah, I’ve been doing palliative care research for a while now and a little bit focused on communication, particularly in the lung cancer space, and doing some qualitative research, interviewing patients and clinicians. It just seems like sometimes there’s a real disconnect and the patients don’t fully understand some of the next steps in treatments. And so, from my standpoint, I just said, “How can I improve this?” And then, from my own clinical background as an intensivist, I have a lot of experience talking to some of my patients, but often their families too, and communication is such a big part of what we do in the intensive care unit, and so just part of trying to better myself, and I think it’s really a topic that deserves a lot of attention.

Eric: Yeah. How about you, Abby?

Abby: I completely agree, Don. I think we in palliative care understand so well that words matter, and we practice this skill, and we really try to be precise with the words that we use. The topic has always resonated with me. I’ll share a personal anecdote that was relevant to this essay that we wrote, and that is my dad, a long time ago, had a medical emergency where he suddenly lost vision in one eye, and long story short, he had an acute retinal detachment, and so they rushed him to surgery.

And I will never forget, he came out of the operating room and the surgeon was meeting with him and my mom and me, and the surgeon said, “Great news, it was a successful surgery. The retina is reattached.” And my dad said, “Great. Well, when will I be able to see again?” And the surgeon said, “Oh, no, you’re not going to be able to see again, but the retina is detached.” And it was this remarkable moment where, as a physician, I completely understood the technical success of the surgery, and yet, from the patient side, my poor dad was sitting there like, “What do you mean I’m not going to be able to see?: And so that precision of a word that meant such different things to the different people in the room felt really important.

Eric: That is a heartbreaking and probably not uncommon scenario. And I think we’ll talk about it in your … was it JAMA Oncology piece, a lot of examples of miscommunication, and that’s a great example.

Before we go on to that, Shunichi, why communication for you? Because, if anybody hasn’t seen it, you’ve got a great Twitter feed that gives tons of pearls on palliative care and a lot on communication. What motivated you to dive into this?

Shunichi: I came from Japan, and then as you see, I have a Japanese accent, and I was not confident about my English when I start working as a resident. I hated to talk to the patient. I hated to talk to the patient in ICU because I was not sure what to say and they keep asking the question which I cannot answer. But, when I was doing the geri fellowship in Mount Sinai, I wrote it as a palliative care, and attending I followed, he was brilliant, and it was so awesome, so cool, and I was, “Oh, I need to do this. I need to be able to do this,” so that which brought me to the palliative care,

Eric: Which attending was it? We’ll do a shout-out.

Shunichi: Nate Goldstein.

Eric: Nate is awesome.

Shunichi: And also Jeannie [inaudible]. I think these two, I still remember

Eric: When I was a resident at Mount Sinai, Nate Goldstein was the fellow on service when I was rotating through it, and that got me interested in palliative care and geriatrics because that was the only rotation where he took me out to Central Park to have lunch, and it just felt like, “Wait, we could do this?”

Don: It was part of the palliative care fellowship, a study of linguistics and communication. It sounds like they’ve really hit the target on that. I feel like all of my best family meetings that I’ve been part of included a presence with palliative care at all hours of the day or night, and it just seems like they really know how to communicate with our patients and families.

Eric: Well, this is the part that I love about your article, too, is that it’s not just these big, big family meetings where miscommunication happens. It’s potentially all these little aspects, too, that we have to be mindful of just the wording that we’re indoctrinated into the medical culture of the words that we use and how that could be misconstrued. Before we talk about that, would somebody be willing to give me … what do we mean by miscommunication?

Don: Yeah, happy to jump in there.

Eric: Don, I’ll turn to you.

Don: Oh, go ahead Abby.

Abby: No, I was waiting for you, Don. [laughter]

I’ll speak it very clearly, Don. Will you please answer the question for us? [laughter]

Eric: That was miscommunication on my part. I didn’t assign somebody to ask. [laughter]

Don: All right. Yeah, I think we took a pretty broad definition in the article, but really it’s any failure to communicate clearly and adequately. And I think, in a medical sense, for me, taking it home is it’s whenever a patient leaves a clinical encounter and they still have a lot of questions, or they’re confused and they’re unclear about the next steps. To me, that’s the definition of miscommunication.

Eric: Yeah. And any examples from your own clinical experiences of miscommunication?

Don: Yeah, I think there was actually recently a really nice article by Jackie Kruser and Bob Arnold in JAMA that talked a lot about communication in the intensive care unit. And it talked about, often, we talk to families and we say things like, “If your loved one’s breathing gets any worse, they’ll need to be intubated.” And just including that word need and in that phrase, it conveys that it’s more than a clinical assessment, it’s really coming from this point of authority that this is the next step in care. Then when we ask them what they’d like to do, it should not surprise us that they’ll say, “Okay, Well, please intubate my loved one,” and instead how can we reframe that and talk about what are the potential next steps, and how can we talk about someone’s goals and preferences instead of using that one simple word in there, I think, conveys a lot more than we think it does.

Eric: This is our first in a lineup of three communication podcasts. This one’s going to be focused on the miscommunication. We’re going to be talking about need and that article that came out coming up, and then we’re also hoping to have Gretchen Schwarze on to talk about her surgical communication series that just got published too. We got a lot coming up around this issue.

Abby, coming from your end, any particular examples around miscommunication?

Abby: Yeah. I’m not sure, Don, it’s so interesting, I don’t know that I would say miscommunication is every time folks are confused. To me, that feels hard because I guess my inclination is that I want communication to be fixable, and there’s so much medical information and there’s a lot of reasons for families to feel like they’re struggling to understand. I think I would be maybe more precise in how I define miscommunication personally, and that’s when we specifically use words that are misunderstood by the family. That word need, for example, we might think it means something differently when we’re talking.

We talk a lot in our field about trying to avoid jargon, because we know families may not understand some of the lexicon that we have, and then we forget when we use common words like, “Your disease has progressed.” Most people think progress is a good thing, and so, unless there is some contextual information and some additional training in the words that we use, it’s really hard for families to always know what we are talking about, and that sets us up for trouble because it adds to that confusion. I’m struggling a little bit with how do you draw the line? How do you lump or split all the ways that we communicate with families to help them understand, and then what are the specific things we do to make it harder for them to understand? And I think that’s where I’m trying to distinguish miscommunication.

Alex: This is really complex. We could probably talk for the whole hour about what is miscommunication, there’s so many angles to this, and I love the title of your piece, Miscommunication in Cancer Care-Do You Hear What I Hear? And often what we say is not what is heard, and that’s a real challenge for us. A lot of what we write about here is trying to be precise in our language, and importantly, you also emphasize checking for understanding afterwards, because even when you use the most precise language, sometimes what patients and families hear is not what we said, and that’s just the reality. And I think of the Doug White article?

Eric: Lucas?

Alex: Yeah, Lucas.

Eric: Yeah, Lucas Zier.

Alex: Yeah. What proportion of time do surrogates of seriously ill patients in the ICU rely solely on the doctor’s prognosis? What was it, 5%?

Eric: 2%.

Alex: 2%.

Eric: 2% of the time.

Alex: 2% of the time. There’s so much other information that goes into their understanding and how it might differ from a clinician’s understanding.

Eric: And I love the idea of miscommunication being when what the clinician hears is different than what the patient or the family hears. I have so many examples of this, because, apparently, I’m not a good communicator. I remember, one time, I said, “Oh, good news, we’re transferring your loved one to the floor,” and I’ve never seen somebody look so upset and shocked, because they literally thought I was transferring them from their bed to the floor of the ICU.

Alex: Oh, my gosh. No.

Eric: Oh, my God. Another time when I was talking about breathing machines, they thought I was talking about nasal cannulas. It’s so hard because everything that we use, the jargon, I don’t even recognize it as jargon anymore, it just seeps into these conversations, let alone some of the other things that you mentioned in the article, including, “This condition is treatable. There are things that we can do. We have treatments for this.” What’s the problem with those types of statements?

Don: Yeah. We talk a lot in the article about this emphasis and reliance among clinicians on these treatability statements, and that, during the clinical encounters, we emphasize those so much that we don’t even stop to take a step back and talk about maybe the treatment is no more treatments, and how do you integrate palliative care in these conversations as well? And I think that the treatability, I think is a really ingrained thing in medicine that we think about and that there’s always got to be a next step, another treatment, another option, and unfortunately, that’s not always the case. And so I think that’s a really important thing.

And also, too, you talk about jargon, well, we want to stay away from medical jargon of course, but I think sometimes that leads us into this everyday language where we use phrases that we use in everyday life, but in a medical setting, they confer different meetings. I think that’s a lot of what Abby was talking about, and I think that that’s a really important point here as well.

Abby: Yeah, like my dad’s retinal detachment was treatable, and the surgeon was really excited about the treatment that that surgeon could do,

Eric: And he did a really good job of that.

Shunichi: And he successfully reattached the retina. Shunichi, you’re laughing. What are you thinking?

No, I think we say, in the ICU, “He’s stable,” or, “He’s better today.” Day one, got worse, from zero to minus 100, and then got better three times in a row, but by just one and still minus 97, but he’s getting better three times. Then, of course, family feel that the patient is getting much better, but still a minus 97. Better or stable, that we have to be very careful using that.

Abby: That’s such a good example. I had this recently when I was taking care of a patient in the ICU, and we as a clinical team were rounding and noticing that, on average, the person was better. We had decreased the pressor support. The vent settings were a little bit better. The whole team felt like, “Oh, she’s better today,” and the family said, “You know what? Four times, we were up in the middle of the night because her pain was really terribly controlled. To us, it was a terrible day, and why are you saying she’s better?” Because what mattered to them was not what we as a clinical team were seeing and discussing as a priority. Even that kind of disconnect made it really hard for us and the family to be on the same page when we were talking about the plan of care for the day.

Eric: Well, how much of it is just the medical and surgical culture? You have a problem and we’re taught how to fix the problem. This is what Gretchen Schwarze writes in one of her series about surgical communication, again, we’ll have her on, but we focus on problem intervention, problem intervention. And even, like in the ICU, you have this problem, is it getting better or worse? It may not be the big, big problem if you take a big step back. Their oxygenation, while important, whether or not we can take them off the ventilator, probably has nothing to do with the big picture, oh, and they’re dying of metastatic pancreatic cancer.

And Gretchen does this really great thing is, if you actually focus, let’s say, on surgery, there’s really only four things surgery helps with, live longer, feel better, prevent disability, or make a diagnosis, only those four things. But nobody ever says, not just in surgery, but in medicine too, in the ICU, will this intervention achieve one of those four things, rather that we focus on, like for your dad, Abby, we have this problem, we can fix this problem. I’m guessing they never talked about will it make him live longer, feel better, see, prevent disability or fix disability, or make a diagnosis? Thoughts on that?

Don: To me, it all boils down to that singular most important question you can ask a patient is, “What’s important to you?” And I think, when you lose focus on that … to Abby’s father, it wasn’t important that his retina was reattached, it was important that he had his vision back, and so was the discussion around that ever? And so I think asking that singular question to patients, we glean so much information on, and it just becomes more of a conversation and really thinking about what matters most to folks.

Eric: Well, I guess, Shunichi, how do you actually do that? If you just ask somebody, “What’s important to you?”, that may feel overwhelming for folks, or they may say, “What’s important to me is that I cure this cancer,” when in truth, and Gretchen points this out too, is that cure is not really the end that they’re hoping for. What they’re really hoping for is that they’ll live longer or they’ll feel better or they’ll prevent disability. How do you actually ask that question?

Shunichi: I think, personally, my go-to question is, “What are you most worried about now?” I think this is the question I use all the time. In the initial encounter in after I introduce myself, evaluate the patient pain, shortness of breath, I asked about the family structure, functional status before the admission, and then, after that, I ask what they’re most worried about. And if they say that, “I have pain,” then I have to stick with pain, but if they say, “I don’t know what’s going on with me. I don’t know what’s going to happen next,” that is a opening to me that where I also, “What did doctors tell you?” Then we can go from there. The same with the family meeting. When I am at a loss where have to go, I always ask what they’re most worried about, and then the answer to this question is going to give me the guidance which way I should go. I think what is most important to you is also, I think, useful, but, to me, “What are you most worried about now?” is I think, for me, easier to ask.

Eric: Yeah. What do you think about that, Don or Abby?

Abby: I’m going to use Alex’s words from before, that’s really complicated.

Eric: I just want a checkbox, Abby.

Abby: I know. Oh, gosh, I have so many thoughts right now, Eric, from that. Shunichi, I think what you’re describing is so important because the worry frame over the hope frame, in fact, gets to the heart of what people are trying to avoid, which may be, Eric, gets to the question that Gretchen can ask of the purposes of the different surgeries. I also think we really want to say that good communication is a learnable skill that, with practice and continued work, we can all continue to replicate. And what I’m thinking, honestly, is we still mess it up sometimes. We still pick the wrong phrase or we get the wrong thing and we miscommunicate. And I think perhaps what that leads us to is that part of the skill set and the precision with our words is to recognize when we’ve messed up, too, and to try to correct those errors and recommunicate so that we can get back to where we can help our patients.

Alex: Can I ask about hope and optimism? Because one of the things you do, Don and Abby, in this terrific article is you talk about all of the drivers that lead clinicians to end up in these miscommunication traps, and that one of the big drivers is that we love our patients, we hope for the best for them, and we want to be optimistic with them, and as the late, great Jane Weeks showed, our patients tend to be more satisfied when we paint the more optimistic picture rather than the more pessimistic picture, at least in the case of cancer. I wonder if you could say a little bit about, well, what’s the matter with being optimistic? You hear this all the time from patients and family members. “I want you to be positive, doc. That’s what I need from you. I need you to support me. I want to have positive thinking.”

Eric: It’s important to them right now, it’s being positive.

Alex: That’s right.

How do you respond to that, Don?

Eric: My satisfaction scores will go up.

Don: You’re using my own words against me here. I think, as Abby said, it can be hard. It’s a little bit of a fine line to walk. How can you deliver direct communication in a gentler way? I think what we’ve seen in the serious illness communication space is that folks don’t want to do it because it’s difficult. We avoid it. Most of us don’t have training in that space and don’t have a ton of opportunities there, and so we just try to avoid it, and so the optimism piece is easier to do and patients want that, but I think it just does a disservice when we talk about miscommunication and all the potential consequences from that.

We really owe it to our patients to be as honest as we can. And I still think that concept of hope for the best, prepare for the worst, I think you can’t just get that hope for the best part, you have to prepare for the worst too. You have to include both parts of that when you talk to patients about it too. And I think one of the other important parts for me as an intensivist is talking about uncertainty. No matter how positive I might be, there’s a ton of uncertainty around that, and so I think that’s important to acknowledge to our patients as well.

Abby: I think I agree with what you said, Don, about we have to do both. It’s different to say to a patient there is no hope … there’s always something that we can do to provide care. And when we only do the laying crepe hard part without hoping with them, then I think we also do them a disservice, because we’re trying to align with folks. And, Alex, as you said, we hope too. We love these folks too. We’re hoping for a miracle too, even if we feel like it’s inauthentic to say that. I think we all really want what’s best for our patients. And so how we balance the phrasing, I think, is really the art here and how we have to practice saying the hope and worry thing together.

I will say, one of the things we put in the essay, which is one of my favorite parts, is we mentioned this thing called the optimism bias is, by the way, the most prevalent bias in human behavior because you’re like, “It’s going to take me less time to get to work today because traffic won’t be bad today,” or, “I’m going to win the lottery.” We do it all the time. And, when it comes to a loved one or your own life expectancy or your own quality of life, of course, we’re optimistic, and of course, we’re optimistic as clinicians. Why would we expect that to go away? And so I think, instead of trying to avoid it, the real thing we all need to practice is how do you enable that hope while also integrating realism in a way that feels compassionate, kind, and supportive.

Eric: The big light bulb moment for me around hoping for miracles is realizing, “Hey, we’re actually prognostically aligned here. It would take an act of a supernatural being opening up the skies to change the course of this care. Okay. We’re all in agreement of where we are prognostically. I don’t have to focus on that component anymore,” because you can hope for a lot of things. I always talk about I play the lottery occasionally, not very often, but occasionally. I know I’m not going to win it. Do I hope to win it? Absolutely. Can you spend half an hour talking to me about why I’m not going to win it? Absolutely. I’m still going to hope that I’m going to win it.

Thoughts on that, Shunichi, aside from trying to tell me not to play the lottery?

Shunichi: No. I think, yeah, sometimes I encounter the resident or resident, medical students, that the patient is dying, and then we told the patient, patient understands, and then patient says, “I want to get better.” Then resident come to me, Dr. Nakagawa, does he really understand? Maybe we should have another family meeting.” But, no, no, no, that’s okay. it’s okay for him to hope. It’s okay. That does not mean he doesn’t understand the situation. Yes, I agree with you that everybody can hope in whatever situation.

Alex: I wonder, can we do some call and response? This is new for GeriPal. It’s fun to do new things. Don, can you pull up that table from your article?

Don: Sure.

Alex: I’m going to be the clinician giving the example of the phrase that’s potentially misconstrued and you can tell me, in response, what the patient or family member hears. How’s that sound?

Don: Sure.

Eric: For all of our listeners, if you want to see the table, we’ll have a link to it on the show notes of the GeriPal podcast. Just go to

Alex: Yep. All right. Here we go, “There are things we can do.”

Don: Yeah, I think the patient and the family might hear that as, “It sounds like this is under control, that they have a cure for this, and I will survive, and that it’s not a big deal if we take the right steps.”

Alex: Yep, “This cancer is treatable.”

Don: Yeah. Again, I think, “They can cure this and I will survive.” And so I think folks will just see that as, “This is not a big deal. I shouldn’t worry too much.”

Alex: The neurosurgeon actually said this to my dad after he debulked a glioblastoma multiforme from my dad’s brain, he said, “We got it all.”

Don: Yeah. I think that’s a really troublesome thing, but we hear it very often, and I think patients and families hear that as, “I’m cancer-free now and that they got it all, and there’s no more risks related to this cancer.”

Alex: Yeah. How about this one is pretty common, “It’s time for palliative care.”

Don: Yeah. I think that’s a really tough one. I think, when patients and families hear that, they think that clinicians are transferring your care and that they’re not going to be involved anymore and they don’t care about you and that all of your worst fears are happening.

Alex: Yep. How about, “We’ve done the best we could?”

Don: Right. And, again, this is this feeling where you might feel abandonment and you feel like that, “There’s nothing more that they can do for me, and so they’re releasing my care.”

Alex: Yeah. How about this one is pretty common too, “We have to be realistic about the future?”

Don: Yeah, and I think that’s one where, as Abby talked about, it’s really the destruction of hope, and so they might be thinking, “I’m just going to give up right now,” and that any additional care is futile.

Alex: Yeah. And then here, this is one I hear all the time, “There is nothing left for us to do.”

Don: Again, I think that’s never the case, and I feel like they might feel abandoned by that and they might feel like their clinicians don’t care about them anymore.

Alex: Yeah, yeah, so common. Yeah, the, “Nothing left for us to do, I remember Patrice Velars, one of the nurse practitioners who’s now retired, but was on our palliative care service for years, she used to say, “Well, what about palliative care?” The place I hear it most often, Don,, frankly is in the ICU when the intensivist says that to the family. It’s like, “Oh.” They feel like they’re being abandoned. This additional care is futile, as you say in the article, very problematic.

Don: And thanks to the late, great Randy Curtis, who really was part of the movement of palliative care in the intensive care unit. Hopefully, people aren’t using that phrase anymore, but I agree with you, that was a not uncommon phrase that you’d hear. And I think, still, there’s a lot of education around that for folks.

Alex: It’s hard to unlearn these things. And one of the things you point out here, another driver, is that we use this language with each other. And so not only do we need to cut it out of our conversations with patients and families, we need to cut it out of the conversations with each other. They try to stop saying, “There’s nothing more we can do,” to the patients and families, but it’s hard to do that when they’re so used to saying it, because they say it to each other. Abby?

Abby: Oh, no, I was agreeing with you. I was actually thinking of a new example of a miscommunication intra-clinician, and that is when, back to this hope and optimism thing, when a clinician will choose not to say the hard things because we don’t want to take away hope, and there’s this weird belief that we can somehow rob a person of their hope. And, if you say to somebody, “There is nothing more we can do,” even if you say it that boldly and that badly, you know that family is still hoping that you are wrong. They still have hope. They’re just hoping for something different than what we think. And so it’s the same idea about what is the meaning behind the words that you’re using and what are you trying to convey?

Don: And I just think the evidence is pretty clear in the literature that patients want communication about prognosis, and it doesn’t actually destroy their hope a lot of times. I think it actually supports hope and their peace of mind. I think preparation is a very valuable tool among patients and families, and so I think, as clinicians, we have to move away from that a little bit that, just because we say something, it’s going to totally change a .patient’s state of mind. And so I think it’s important for us to develop skills from ourselves becoming comfortable with that language. I think it’s probably looking within is what we really need to do in these situations.

Alex: And I love in your table, too, how you have alternatives, like, “Here’s what the patient and family hears. Here’s a better way that you could do that in this sort of encounter. I have to share some serious news as a way of starting your conversation.”

Abby: I was just going to say, I think the last piece of this triangulation is that patients and families can use words that we misunderstand too, and I will just stick on this pathway of hope that we’re on. I think families are more likely to articulate their hopes than their reality. I think that is part of that optimism coming into play. And so one of you guys had said earlier, they probably know the real prognosis, that the fact that they’re not willing to say, “Yes, I know I am going to die,” doesn’t mean they don’t know. It just means they’re afraid of saying the words. And so how do we, who really want that acknowledgement of prognostic understanding, grapple with that when it is a real big ask for some people to actually articulate that?

Alex: I would imagine that, intensive care unit, this comes up all the time, parents of kids who are seriously ill, this must be like this is your day, this is everything, so much of this, dealing with hopeful parents in the face of serious, serious illness. It must be so hard, as is caring for older adults who are also seriously ill and et cetera. Any pointers? We don’t have many pediatric palliative care providers listening, but maybe some, and for those out there, who are any particular points for those, and particularly thinking about talking with hopeful parents of young, seriously ill kids?

Abby: Yeah, Alex, I think folks think it’s harder with parents, and it’s probably the same skill set that you use in any practice. We did this the last time I was on, what can you learn from pediatricians in palliative care, and it’s such a fun game for us pediatricians to play. I think, in pediatrics, this idea of not giving up a parent’s hope and supporting their hope against all realism is part of how we practice. We never take that away. We do really try to say, “I wish that that could happen,” or, “I think that that is very unlikely and I’m sorry. Can we prepare for this other possibility at the same time?”

And, you made this comment earlier, people want more optimistic clinicians in pediatrics, that becomes really important, because if they feel like you are not aligned with them in hoping for the miracle, it is much more difficult, especially as the child gets to the end of life, to be in partnership with families when you need them most. And so, to me, I always do this mental math and gymnastics, which is, today, how much do I need to push so that I can still show up tomorrow, and then tomorrow, how far do I need to push so that I can show up the next day? Because we recognize that it’s going to be a long and really hard couple days, couple weeks, couple months, whatever it is.

Alex: Yeah. This is a process.

Eric: I still remember to this day, Bob Arnold, again, who will be on our next podcast around communication, he was giving grand rounds here, and it was really the first time I ever heard it, which seems like it’s such a simple concept, but if you ask somebody about their hopes, you can dive into that about what they’re hoping for. Ask the next question, “What else are you hoping for? And what else are you hoping for?” Because nobody, nobody only has one hope. They have many, many hopes. People are multidimensional. They care about a lot of things, and that has really stuck with me, because I remember one time somebody was hoping to be cured from their cancer and also hoping that they can leave the hospital as soon as possible so they can die at home. And, if you never explored all of their hopes, you thought, “Oh, wait, wait, so this person is hoping that they’re cured from the cancer. What are we going to do now?” When, in truth, it was just one of those many things that they were hoping for.

Alex: That’s a great pearl. Speaking of pearls, should we move to Shunichi’s Twitter feed?

Eric: Speaking of pearls.

Alex: Shunichi, your Twitter feed is like haiku. Maybe I’m saying that because you’re Japanese, and it’s because it is like haiku. The way you write these tweets, it’s incredible. You wrote a tweet about ice water.

Shunichi: Yeah, ice water.

Eric: Shunichi has tons of pearls. One of them, “In a family meeting, before we give bad news, we need to know how much they know of in the situation.” And one thing that we often hear is people ask, “What is your understanding of this situation?” Shunichi, you said, “This is okay, but it’s not great.” Why is it not great?

Shunichi: Because it might sound offending, I put the blame on the patient’s side, “Do you understand?” I had a bad experience that backfired, “What are you talking about? I understand. I’m not stupid.” That was my experience. Since then, I try to say, “When was the last time you talked to your doctor and what did she tell you, what did she tell you? How were you explained?? I’m blaming other doctors. We know doctors are bad in communication, so blame other doctors.

Eric: I love that. From a palliative care perspective, my line is always, “Oh.” I always blame, sorry, Don, the ICU doctors. “Oh, what have the ICU doctors told you about what’s going on?” [laughter]

Alex: Poor ICU doctors, you’re getting a lot of grief today. [laughter]

Don: We’re getting beat up. We’re getting beat up a little bit here today. That’s okay.

Abby: Some of you are great, Don.

Don: What’s that, Abby?

Abby: Some of you are our best friends. We love some of you. [laughter]

Eric: I just want to highlight, too, is when we started our outpatient palliative care clinic well over a decade ago, we thought, “Man, these oncologists, they’re just not talking about prognosis at all. We’re going to go in there and we’re going to have these conversations and everything’s going to be different.” Barb Drye, our first palliative care provider in the outpatient clinic, she went in there and she learned, “Oh, they are having these conversations all the time, and when I see them again, they hear something different.”

I love this one in particular, because it’s really about this hearing, what are they hearing? Even when we use a line like, “What have the doctors told you?” It’s like that ask, tell, ask. It’s that last ask. How much do they actually understand or comprehend or have a very different viewpoint about what they’ve been told?

Don: Yeah, and I think we talk a lot about it’s okay to misunderstand things, but from the clinician side, it’s up to us to try to direct patients and families to understand what we understand. And so we talk about those teach-back techniques, and also really important to leave space and time so they can ask questions and you can develop this shared understanding. That’s such a big focus that we talk about, and I think we talk about miscommunication not in the fact that we should all be infallible and that this is never going to occur. That’s not really what our main message is whatsoever. Our main message is it’s going to occur, so we need to figure out how to remedy it and how to mediate it. One of the lines in our article is what role do patients play in miscommunication and what is their responsibility, and the line was nothing. It’s up to clinicians to fix this and to ensure that this communication doesn’t occur and that, if it does occur, that we figure out how we can remedy it really.

Eric: I got another question then, this also happened to me, different setting, where I was actually giving feedback to somebody, and I was really trying to choose my words very, very correctly and concisely, and apparently, I was taking a very long time to do that. And the person said, “Use your words, Eric.” At what point does it become so awkward when we’re trying to parse out every single word that we want to choose it becomes unnatural? We did another podcast on uncanny valley where it’s no longer realistic, you’re no longer a real person. You’re this person who is so focused on, “How could they interpret this word?”

Shunichi: I think that, every time I say something new, I was like, “I feel very awkward. Oh, did I just say that?” But I think you have to practice, and then, the more you say, the more it becomes more natural. Yes, you read some book or you try to steal a phrase from somebody else, and then you say that for the first time, it does feel awkward. It does sound mechanical. But I think, the more you say that, I think the more it becomes more natural.

Abby: I’m just going to echo, it’s the authenticity piece. And I think, Eric, to your example, directness is kindness. You are less likely to miscommunicate if you try to keep it simple and brief and recognize that people have their own processing speed. Just as we come into the room and we have language that they might not understand, we know the implications of what we’re going to say because we’ve seen it dozens of times, hundreds of times before. To the family, this is their n-of-1, this is their unique experience where they suddenly were the recipients of this really difficult news and we expect them to magically get it five minutes later. And that, I think, is part of the exercise, too, is we have to imagine we’re going to come back again and again and again to help them get to that place where they understand.

Don: Eric, I was just going to suggest maybe you need some feedback training or something.

Alex: That’s good. Give it back to him, Don.

Eric: I got an old microprocessor in here, so there’s a long lag time. There’s only so much that this thing can do.

Don: I never schedule feedback meetings after lunch because it’s not going to work out.

Alex: can I want to read another one of your tweets. “Patient is aware that they are dying. They already expressed that they want to be comfortable. Then don’t ask, ‘Do you want CPR?’ Just say, ‘We will not do CPR.'” Can you say more about that?

Shunichi: Yeah. I think medical students are taught in medical school that, “Okay, so how do you ask the CPR?” They memorize these questions, “When your heart stops beating, do you want us to do CPR?”, these neutral, yes, no questions. But I think, as we this memorize this phrase and ask this question at the bedside, it does not need any expertise. We studied so hard and we trained so much, so hard. We know, as a medical professional, what the CPR means in this context.

If I’m asking Alex right now about the CPR, I have to ask in a very neutral way, “Do you want us to do the CPR?” But, to the patient, that the patient’s already dying, they know that, and they already said that, “I don’t want to be in pain. I want to be comfortable.” To ask them, “Do you want us to do CPR?”, I think it’s stupid, but, still, many resident ask that way. They did such a great job talking about, “No, your time is short,” and then they did such a great job exploring goals and values. And then, at the very end, we have to clarify code status. They asked about, “Do you want us to do CPR?” [inaudible 00:45:42], “Oh, God, no, no, not that.”

Abby: It’s so hard though because they have their own checklist. Somebody told them to get the DNR, and so then they feel like they have to get something and check some boxes.

Eric: Do I or do I not do this intervention to fix a problem that will come up potentially overnight when I’m on service?

Shunichi: I use analogy of this, “How does it sound?” I went to the Japanese restaurant yesterday, the new one, and it sucks. Food was bad, service was bad, very expensive. The next thing I’m going to tell you is, “Don’t go there,” and you should not go there. And I don’t tell you, “Do you want to go there?” I just want to make sure you understand. [laughter]

Alex: That’s right.

Shunichi: If I keep asking you yes/no questions, I think you start to wonder, “Why this guy keep asking the same question? Maybe something good in that Japanese restaurant.”

Eric: Yeah. It’s like, hey, oh, I find out you’re a vegan and you don’t eat meat for multiple reasons, and you tell me all about this for half an hour, and then I say, “Oh, by the way, do you want to go to Alexander’s Steakhouse tonight?”

I have another question for you, Shunichi, because you also do communication teaching back in Japan as well. I think I’ve seen some of your Twitter posts. How much of this is communication unique to the cultures that you’re dealing with versus some bigger global principles? When you go to Japan and you give these talks, is it similar principles? Do you have to tailor it to what’s happening there?

Shunichi: I think the principles are similar. I think it’s fair to say that palliative care or communication training in Japan is much, much more behind than the US. I think, US, we are doing a decent job, still not enough, but I think Japan is much, much more behind. I think we use VitalTalk and we use SPIKES and NURSE and the REMAP. We teach those. And the big difference is that Japanese people show less emotion during the conversation. They look very flat and then they don’t get upset so much. Inside them, they are upset, they are emotional, but they don’t show us, so that I think we try to address emotions from our side more proactively, “It might be very surprising to you, you hear that. It must be too sudden.” But I think the basic principle, addressing emotions and then answer questions simply, those things are the same.

Eric: Well, I want to be mindful of the time. We’re getting close to the end of the hour. I think we still have one song, but while Alex preps, real quickly, lightning round, if there’s one thing you’d love for clinicians, nurses, doctors, NPs, social workers, one thing that we should be doing, if you had a magic wand, what would you use that on?

Shunichi, aside from reading your Twitter feed, which was my magic wand, anything that you wish clinicians would do?

Shunichi: Don’t use want in the family meeting. Don’t use that.

Eric: A great article. We’ll be talking about that want statement too, which is really hard. We’ll have a link to that. There’s a great article on the want, I think from a couple of years ago.


Don: I’m going to put it back on the institutions. I think our institutions need to support better communication in our cancer centers and maybe need communication quality metrics, and so I’m going to take it off the clinician’s plate. We’re pretty burned out. We need some help from our institutions.

Eric: And Abby?

Abby: Oh, my God, I love it. Well, first it’s play with Shunichi’s Twitter feed, it’s a rabbit hole, you’ll spend hours, but it’s a just wealth of information. Mine is I think it would be great if all of us could pause and listen to our words from the perspective of a family, and I try to do this often. I will try to listen to a conversation as if I were the patient, and it really helps you to pick up some of these words that sometimes we don’t even know we’re saying.

Alex: Oh, I love that.

Abby: And, Alex, how about we end a little bit more … what was the title of the song again?

Don: Hello, Goodbye.

Alex: Hello, Goodbye.

Eric: Hello, Goodbye.

Alex: Beatles.


Eric: Well, Shunichi, Don, Abby, hello to the GeriPal podcast, goodbye, but we want to say hello again soon to have you back on. Thank you for being on the GeriPal podcast.

Abby: Thank you, everybody.

Don: Thank you so much.

Abby: Bye.

Shunichi: Thank you.

Eric: And to all of our listeners, thank you for your support.

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