Afternoons in the Tower of Babel: Miscommunication in the ICU

Listen to ASCO's Journal of Clinical Oncology essay, "Afternoons in the Tower of Babel" by Barry Meisenberg, Chair of Medicine and Director of Academic Affairs at Luminis Health. The essay is followed by an interview with Meisenberg and host Dr. Lidia Schapira. Meisenberg describes how oncologists and families of patients in the ICU lack a common language when discussing status and prognosis.

TRANSCRIPT

Narrator: Afternoons in the Tower of Babel, by Barry R. Meisenberg, MD (10.1200/JCO.23.00587)

We talked for hours in that little windowless room adjacent to the intensive care unit (ICU) during his final week.

A patient dying of a toxicity that should have been treatable, but is not.

The oncologist's tasks:

to care for the man in the ICU bed by caring for his family; to knit up the raveled opinions of the many consultants; to forge from these strands a family's understanding of status and prognosis; to be a family's ambassador in the ICU, while others toil to adjust the machines and monitor the urine flow; to make a plan that relieves suffering and preserves dignity; and to do all this not with brute-force honesty but with patience, gentleness, and humility.

The reckoning process begins for a wife, three adult children, and a daughter-in-law. The youngest begins the questioning.

"So, if our prayers were answered and the lung cancer is shrinking, why are we here?

"It happens this way sometimes," I hear myself saying, instantly dismayed by my own banality.

This is not a physiologic or theologic explanation. Its only virtue is that it is factual. It does happen this way sometimes, no matter how fervent or broadly based the prayers. I have wondered why it is so for more than 35 years as a student of oncology. But the quest to understand is far older than my own period of seeking. Virgil's1 Aeneas in the underworld observes: The world is a world of tears and the burdens of mortality touch the heart

In the little windowless room my words, phrases, and metaphors, delivered solemnly, are studied as if they were physical objects one could rub with the fingers or hold up to the light like Mesopotamian pottery shards with strange carved words. My word choices are turned inside out, and compared with yesterdays', I can see the family struggling to understand; they are strangers in a strange land. How lost they must feel, barraged by a slew of new terms, acronyms, and dangerous conditions. The questioning resumes.

"Explain 'failing,'

explain 'stable,'

explain 'stable failure,'

explain 'insufficiency.'"

My first tries were themselves insufficient.

I try again; choosing carefully, using different metaphors:

-the heart as pump,

-the bone marrow as factory,

-the kidneys as filter,

-the immune system as … a loose cannon.

-the lungs as collateral damage

The soon-to-be widow restates my phrases to see if she has it right. Worn down by the exercise, I nod. Close enough.

Daughter-in-law, following carefully, is quick to interject,

"But yesterday you said the X-ray is 'unchanged,' so why does he need more oxygen?"

Did I say that? Yes, the notebook in her lap remembers all.

"You say now 'rest the lungs' on the ventilator, but last week, still on the oncology floor, you said get out of bed and work the lung as if they were a muscle."

Carefully, I unwrap more of our secret lexicon:

"Proven infection" versus "infection"

"Less inflamed" is still dangerously inflamed.

Five sets of eyes, five sets of ears, five sets of questions. And the notebook.

I begin again, choosing carefully. The learning is a process and occurs incrementally.

I tiptoe around acronyms and jargon. I assemble the words and metaphors to build understanding. This is part of the oncologist's job; at times, the most important part.

But words are not all the tools we possess. There is also the language of the body.

The grave subdued manner, the moist eyes, and the trembling voice, none of it pretend. The widow-to-be slowly absorbs these messages in a way that she cannot grasp the strange wordscape of the ICU.

With time, understanding drips in, and the wife makes the difficult decision that all families dread, but some must make despite the fear.

And tears come to this anguished but gracious family who manage, amid their own heartache, to recognize the dismay and bewilderment of the oncologist who used the right treatment at the right time but still lost a patient. The family sensing this offers to the doctor powerful hugs and the clasping of hands that opens their own circle of pain to include one more in search of why.

Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Associate Editor for Art of Oncology and a Professor of Medicine at Stanford University. Today we're joined by Dr. Barry Meisenberg, who is Chair of Medicine and Director of Academic Affairs at Luminis Health. In this episode, we will be discussing his Art of Oncology article "Afternoons in the Tower of Babel."

At the time of this recording, our guest has no disclosures.

Barry, welcome to our podcast, and thank you for joining us.

Dr. Barry Meisenberg: Thank you for having me.

Dr. Lidia Schapira: Barry, let me start by asking you my now famous question: What are you reading now and what would you recommend for our listeners and readers?

Dr. Barry Meisenberg: I will tell you that, for a very special reason, I've been reading Thomas Wolfe. You know, the author of Look Homeward, Angel, and his final book everyone knows the title of You Can't Go Home Again. But I've been reading them with a very specific view. I'm interested in all the medical interactions and I find them immediately relevant to what I'm doing. And Thomas Wolfe talks about physicians treating dying patients. And the good physicians are also really caring for the family. And there are a couple of just wonderful examples. Would you like me to read you one?

Dr. Lidia Schapira: I would love it.

Dr. Barry Meisenberg: So this is from Look Homeward, Angel when Tom's beloved older brother Ben is dying from post-influenza pneumonia. And part of his family just can't understand it. They can't get used to it. And they keep insisting that the local physician do more. And this doctor who's Dr. Coker in the book, that's not his real name, of course. And he says to the sister, who's pretty close to hysterical. He said, "My dear, dear girl, we can't turn back the days that have gone. We can't turn life back to the hours when our lungs were sound, our blood hot and our bodies young. We are a flash of fire, a brain, a heart, a spirit, and we are three cents worth of lime and iron which we cannot get back." And I say this that as we learn when we're in the ICU, we see a patient in the bed and we think, "end of life" and families look at that patient in the same patient, the same bed, and think of the young person, healthy lungs and strong desire for life. And we don't always see the same thing. And I just thought that piece of advice by that doctor was wonderful.

Dr. Lidia Schapira: That's beautiful. Thank you so much for sharing that with us.

Dr. Barry Meisenberg: Thank you.

Dr. Lidia Schapira: This is a very special piece. And the first thing that I wanted to ask you about is how did you choose the title?

Dr. Barry Meisenberg: I feel, as the readers will appreciate, that we often struggle to communicate with families because of the jargon and of the strangeness of the environment. And although the Tower of Babel is obviously a biblical reference where God punishes humans by scattering their languages so they can't communicate with each other, in the more sort of vernacular sense of that word, it just refers to a failure, an inability to communicate openly. And I think that's what this article is about.

Dr. Lidia Schapira: Let's talk a little bit about what the article is about. I read it as a very moving reflection, very sincere reflection from an oncologist who is heartbroken because he's about to lose a patient to complications of therapy. Help me understand a little bit about your message and how you wanted to communicate the importance of choosing the right words when the message is just so dire.

Dr. Barry Meisenberg: It's actually two themes. You mentioned that sometimes when you choose the right therapy at the right time, at the right dose, and bad things happen anyhow that aren't supposed to happen, we take it very personally. And the second theme here is then our role as oncology, which I believe is at times the most important role we have, is to explain this strange environment to sometimes the patient, but also the family. And that means being aware of all the acronyms we're using and the jargon. Knowing that there are other physicians who they may have talked to who will say one thing and be seized upon one little phrase by the intensivist, by the nephrologist, by all our other colleagues. And feeling that it's our job, my job to wrap all those opinions together and to explain what it really means because they're all partial views.

Dr. Lidia Schapira: And also to provide guidance for the family. At one point you needed to explain, but also help the family come to a decision, which is a very difficult decision, and that must have felt very bad for you in a very, very difficult situation in a windowless room next to the ICU.

Dr. Barry Meisenberg: Again, I think it's actually our job. Our job is not just to write chemotherapy orders and order images. Our job is to care both for the patient and make sure the end of his life, in this case of his, is dignified, but also to care for the family, knowing what they're experiencing at the moment and what they'll experience after the death. I'm honored to do it. Some excellent intensivists can do this well. But I also think it's my job to do and I think it's important to teach young physicians that's their job.

Dr. Lidia Schapira: So let's talk a little bit about that because I think for perhaps our generation and for more senior oncologists this always has been part of the job and we've always understood that it's our responsibility to be present. To be present as you, I think you use the word as an ambassador in some ways. To reconcile what they're hearing from other people, to provide a framework for understanding what has just happened, and to get past the technicalities of the information and the words written down in the notebook to really tell the patient and the family and comfort them to understand where they're at. But it's not the way many of our colleagues today view the job. Can you reflect a little bit on that? On whether or not it's really the oncologist who needs to be at the bedside to explain this?

Dr. Barry Meisenberg: Well, by way of background, I am PGY 40, I think that's about right, PGY 40 of people of my generation. So I don't know if it's strictly generational, but I do have a whole view of an oncologist, holistic view, as opposed to a partialist view where we don't go into the hospital, we don't do end-of-life conversations in a hospital. We let the palliative care team do that or let the hospitalist do that. I just think it's not good for patient care. It's also not good for the oncologist because this is why we are viewed as a special breed of physician because we can do this. Other people are afraid of it. They don't like to deal with death or bad outcomes or bad prognosis. And we do it in our routine and people honor us for that. And so if we have a new ethic about this that "Let the intensivists do that or let the palliative care team do that," we're losing what makes, part of what makes us special.

Dr. Lidia Schapira: That's a very interesting thought when we'll hold and probably need to come back to it and reflect over the course of the day and the next several days. Let me go back to the scene that you give us in this beautiful essay. And you talk a little bit about the notebook, which I found very interesting, where I think it's the daughter-in-law of the patient is carefully recording the words and she's picking up on some what she sees as inconsistencies. Wait, yesterday you said, or last week you said "Get out of bed," and now it's, "He can't." You used this word yesterday, but this word today.

Dr. Barry Meisenberg: Right.

Dr. Lidia Schapira: Can you share with us a little bit about how you react in those situations? Because I was just sort of feeling the frustration of trying to say, "You need to drop the pen and we need to just think about what's happening here."

Dr. Barry Meisenberg: What you're referring to is this section, when the questioning, when our words are carefully examined, held up for review. Normally, I'm happy to have families write stuff down and record their questions, but if last week I said "stable" and today it's some other term to describe it, well, it is an apparent discrepancy says the notebook. And yeah, a week ago it might have been appropriate, "Get out of bed, get those lungs working." And here we are five or seven days later, and he's on a ventilator because we need the lungs to rest. So explain that and it's in the notebook. Explain this apparent discrepancy, or another physician said he's doing good, meaning he's not progressive. And I'm saying "You've still got respiratory failure."

Failure is a powerful word, by the way. You've got to be careful when we describe heart failure, respiratory failure, bone marrow failure. So this is, whether it's the memory or the notebook, I don't consider it an enemy, but it just shows you how careful we have to be in what we say. And what we can communicate in 15 seconds to a colleague takes much more time, and you really have to use metaphor to explain that.

Dr. Lidia Schapira: So let me pick your brain a little bit. You describe yourself as a PGY 40, and maybe that's literal, maybe it's not. But as an experienced clinician, what advice do you have for some of the junior oncologists about how to sort of feel perhaps when they're being challenged in a difficult situation and how to choose their words and sort of cultivate that way of being with, that presence that can really bring comfort to families?

Dr. Barry Meisenberg: That's a great question, and I just hope that we would all approach this with empathy to try and understand what the family is going through. And the article tries to bring that out, that there's a family struggling in a strange environment. And our patients and families may be very accomplished people, but now they're in a new environment that they can't control, they don't understand, so let's care about them as well. And I never take it personally, someone's challenging my advice or my knowledge. That's almost like expected. So that's how I would try and explain our role there.

This particular family wasn't difficult in that way at all, and I hope that didn't come across that way. They were just very concerned and wanted to know and wanted to be educated and looked to me to provide that in a very respectful sort of way. But we certainly have had other families who insist that obviously there's something else better someplace else and some knowledge beyond what I bring to the table. But once again, what you just sort of care- I guess the best word is empathy or compassion for what they're going through.

Dr. Lidia Schapira: Barry, if you can bear to share this information, is this a patient who died of a complication of immunotherapy?

Dr. Barry Meisenberg: That's exactly right. Lung cancer, smoking history, got immunotherapy. Excellent clinical response until interstitial pneumonitis. So like a more than 50% response to the initial, I think just one cycle. And then though, the symptoms of dyspnea and progressive respiratory failure ended up in a hospital and other complications along the way, heart attack and whatnot. So it is based on a real patient, although the conversations are based on accumulated experience. But it was an actual patient and we knew it early, we used high-dose steroids early, and it just didn't seem to make a difference. And then second-line, third-line, therapies, many of your readers will know that these are all sorts of anecdotes, and one of them was tried as well, but just progressive respiratory insufficiency in a way that just like everything else, when there's a response, we don't really fully understand why some people respond and some don't.

Dr. Lidia Schapira: And how do you deal with and how have you learned to deal with the grief that follows losing a patient, especially under these circumstances?

Dr. Barry Meisenberg: Yeah, I don't know that I have learned how to deal with it. I mentioned in the article that I was welcomed into the circle of grief by this family who appreciated what I was feeling. Somehow it's kind of remarkable that some people do that. Some grieving people can understand others are grieving. So I don't really think that I've got a solution other than this sort of banal notion, as I mentioned in the article, that it's always been this way. Bad outcomes, bad things happen, and maybe it's the way of the world. I would feel differently if I had missed something, perhaps, but I grieve, I but don't blame myself and ready for the next patient next challenge.

Dr. Lidia Schapira: I always think it's wonderful when we are the recipients of such amazing compassion from families and those moments really sort of, in a way, rekindle our vocation and our ability to sort of recharge a little bit, to be present for the next family. I wonder if writing about it in a way helped you process this experience.

Dr. Barry Meisenberg: Oh, I think it absolutely does. And I'm so happy that this journal and this society gives us this opportunity and other journals as well. Because processing, which I guess is a modern term, is so important for us. There's a whole interest in reading things of this nature, not overly saccharine and not overly stereotyped because it doesn't always work out that way. But I absolutely feel that we're a brotherhood and sisterhood, and we need to share with each other because these are things we all go through, which I believe is the whole purpose of this section. Am I right?

Dr. Lidia Schapira: You're absolutely right. And you sort of anticipated my final question, which was, as a community, I certainly feel we need these stories and we need to share these stories. But I may have asked you this question in a prior conversation, but can you tell me how you use stories in your career for teaching or for sharing experiences, or reflecting with colleagues or trainees?

Dr. Barry Meisenberg: I think they're a great opportunity, and obviously we want to encourage young people and medical staff of all ages to write their own and share. But we have a program specifically for residents and trainees where we look at some poetry or very short essays, some of the journals about these kinds of issues, and then reflect. One of them for example is how do you overcome physician errors, and a whole set of readings and poems about errors that have been made and how they linger with you your whole career. Someone wrote a beautiful line, "worn smooth by mental processing," because in general, we don't give them up. So these kinds of things I think are very helpful in reflecting and helping people understand that this is something we are all going to have to face and we're all going to have to deal with in our careers. And you can't hide it, you're going to deal with it so we can't hide from it and it is an effective coping measure.

Dr. Lidia Schapira: Well, thank you so much for sharing your thoughts. My heartfelt condolence on the loss of your patient.

Dr. Barry Meisenberg: Thank you.

Dr. Lidia Schapira: And keep writing. For our listeners, until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of ASCO shows at asco.org/podcasts.

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Show Notes:

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Guest Bio:

Dr. Barry Meisenberg is Chair of Medicine and Director of Academic Affairs at Luminis Health.

Additional Publications:

Questions for the Oncologist, by Dr. Barry Meisenberg and accompanying podcast.