Coping with Serious Illness: Danielle Chammas and Amanda Moment

Eric 00:09

Welcome to the GeriPal Podcast. This is Eric Widera.

Alex 00:12

This is Alex Smith.

Eric 00:14

And Alex, who do we have with us today?

Alex 00:15

We are delighted to welcome back Dani Chammas, who is a psychiatrist and palliative care doc at UCSF in the division of palliative medicine. Dani, welcome back to GeriPal.

Dani 00:25

Excited to be back.

Alex 00:26

And we’re delayed to welcome Amanda Moment, who is a palliative care social worker at the Brigham and Women’s Hospital in Boston. Amanda, welcome to GeriPal.

Amanda 00:35

Thanks for having me.

Eric 00:37

We are going to talk about coping and part of this came up from, and we’ll get into it, a New England Journal piece that Dani wrote. Should I laugh at that? Coping in the setting of serious illness. But before we jump into that topic, which is a pretty hefty topic, Dani, I think you have a song request for Alex.

Dani 00:57

Indeed, I’m going to request It’s Okay by Nightbirde.

Eric 01:01

Why did you pick this song by this song?

Dani 01:05

I love this song as a piece of art, but I also chose it because the artist was a young woman who wrote and sang this song during her journey with terminal cancer, and she has since died. But the song lives on, and it was, in my opinion, a big piece of her unique coping to create and share this song. So it felt very fitting to just today’s discussion.

Eric 01:26

How did you find this song? This is not on pop radio, right?

Dani 01:31

I didn’t know I was gonna get out in this early. I watch America’s Got Talent with my children, and Nightbirde auditioned with this song and got Simon Cowell’s Golden Buzzer. And my kids love watching the moment when the glitter falls on her face. So we watched it a lot of times.

Eric 01:50

Oh, wow.

Dani 01:51

Yeah.

Alex 01:52

I watched American Idol for years, my wife and I. I have to say, I watched this video of America’s Got Talent and I was bawling. My wife was like, what’s going on over there?

Eric 02:04

It’s like, oh, garlic. It’s the onions. This is great. [laughter]

Alex 02:10

So here’s a little bit.

Alex 02:20

(singing)

Eric 03:25

Thank you, Alex. Nice song, Dani.

Alex 03:28

Thank you. Beautiful choice.

Dani 03:30

Thanks. Yeah, I could feel the America’s Got Talent glitter dropping on us. [laughter]

Eric 03:38

All right, Dani, I’ve got a question. So you just published not too long ago. I forget when it was New England Journal. Should I laugh at that? Coping in the setting of a serious illness about a patient encounter you had with somebody who used an. A coping style that we see not infrequently. Do you want to describe kind of in your own words again? You probably haven’t read in a while what that patient encounter was like.

Dani 04:06

Yeah, yeah. I. I remember it well because on paper it was very sad case. Young man, terminal cancer coming in for the first time. And I remember reading the chart and expecting heaviness. Expecting a lot of heaviness. It’s really hard for us all when someone so young is going to die. And he came in and started cracking jokes, these dark humor, pseudo appropriate, pseudo inappropriate jokes from the start. And I was taken aback. And then he was just so cracking up at how taken aback I was. And so he kept them coming.

Eric 04:45

And what was his sticker? What did his sticker say again?

Dani 04:48

It was mist. He gave me stickers that said it was metastasized when I got here. Yeah. Or the first thing he said when I met, he was like, what’s the difference between my dad and cancer? I was like, what? He was like, well, at least my dad didn’t beat me. And I was, like, so taken aback. It was not what I was expecting to see in the room. And I was wondering, like, what do I do right now? Do I. Do I laugh with him? I’m a pretty. You guys know me.

I love to joke, like, I could go down this rabbit hole, but is that going to be in service of him, or is that going to really be colluding with something that’s not in service of him? And so the narrative piece is really the process of, in my own mind, trying to verbalize how I assess somebody’s coping and how I decide in the moment how I’m going to relate to it.

Eric 05:37

Yeah. And that’s the whole point of this podcast. So hopefully we’ll walk through that narrative. But maybe for listeners like me, I struggle in actually defining what coping is. It’s one of those words that we say a lot, but I am not sure I completely understand what I am saying when I use that word. Amanda, what is coping?

Amanda 06:05

Well, Dani and I have been talking a lot about how coping is basically everything that we see in terms of how people express their reactions to what’s happening in front of them. Coping is something that we see our patients do. Coping is something that we do as we’re taking care of people and as we’re moving through the world. So kind of all of the behaviors that we see, it’s some form of coping.

And there’s a lot of thoughts that people have about, you know, what is adaptive coping, what is kind of maladaptive coping. And we can talk a little bit about that, but it’s basically someone’s reaction to what’s happening in front of them and all the ways that it manifests.

Dani 06:49

Too simple or too simplistic. But really, when I think about coping, it’s just like, how do we deal? Right. Like, how do we help ourselves maintain psychological integrity in the face of the stressors that we have to manage?

Alex 07:04

And you use the words adaptive and maladaptive. And just to put that in plain English for our listeners, is that like good coping and bad coping, healthy and unhealthy? Coping, healthy and unhealthy. That’s probably better.

Amanda 07:18

Yeah. And I think a lot of people, they come from their own lens when they’re identifying whether they think that someone else is coping is healthy or unhealthy. And so it’s, you know, it’s something that is an incredibly subjective thing. But I think because we only view it from our own lenses, we think we’re saying something objective when it’s incredibly subjective as we’re identifying it. So trying to kind of build language for how are we assessing that coping.

Dani 07:46

Yeah. I would say, though, one of my hopes for this time together is that we take ourselves outside of this false dichotomy, that coping is good or bad, that there’s a right or wrong way to cope with serious illness because it’s just not the case. Right. We can ask ourselves, is it serving the patient? How is it serving the patient? How is it hindering the patient? There are ways that we can assess coping, but I think that this idea that people are doing it right, right or wrong really gets us into trouble. Because like Amanda said, everything we see is coping.

Everything. Right. Somebody writes a beautiful poem. Coping. Somebody shouts at my front Desk staff because they’re pissed off about their appointment time. Coping, it is all coping. And it just helps me to let go of good and bad and remind myself the person in front of me is doing the best that they can with the resources, internal and external they have available to them to deal with the circumstances they’ve been dealt.

Eric 08:48

But aren’t there some bad ones? Like denial is. What is it?

Alex 08:54

Denial is not just a river in Egypt.

Dani 08:57

Listen. But sometimes denial serves people.

Amanda 09:02

Sometimes it can be really healthy to not dwell on something that you have no control over. Say so say you are waiting for scan results to come back and you got a day between today and tomorrow where you don’t have your scan results. And in that time period, avoidance and kind of denial of engaging with hard things in that time period might be really healthy.

It might be a way for you to cope and get through that time period without completely falling apart or not being yet ready to confront a reality. So I don’t think that denial by itself is positive or negative. Kind of, to Dani’s point, is it sort serving somebody in the moment that it’s happening?

Dani 09:47

And I might get in trouble for saying this about math. Oh, no. I’m scared to say it, but I am going to say it anyways.

Eric 09:55

This is for our TikTok, so you can do it a little dance as you describe the benefits of meth.

Dani 10:01

About meth. About meth. No. So I know the thing is, coping serves a purpose. It’s there for a reason. Whether we think there might be more adaptive coping we can get somebody in contact to or not, it’s there for a reason. There’s a reason the person is using the math. It’s got a function. And so we don’t want to take a sledgehammer to what’s keeping people intact. Even if it’s something that we don’t think is the best for them, we want to respect what it does and then we can think through, okay, how’s it serving? How’s it hindering? Can I adjust it?

Alex 10:36

So for each person, that particular coping mechanism may be a mixture. There may be ways in which it’s healthy for them and there may be ways in which it’s hindering or harmful to them.

Dani 10:48

Yeah, right on, Alex. And if I were to one up that I would say that that ratio changes both depending on time and depending on circumstance. And so we see a lot of people who their coping is that they’re doers, they just have to do. And when they’re in their treatment phase, that’s really serving them. They’re doing. They’re doing. They know which. The clinical trials and the this and that. And then, you know, the. They’ve got it all, the infusions and this, that.

And then we see them on the other side of treatment when they’re in remission, and it’s just not serving them anymore. Right. They kind of come apart in that space because with nothing to do, they have to really look at what’s going on with them. So it can be different over time, and it can be different over circumstance. If you like to compartmentalize, well, gosh, when you’re going to Disneyland with your kids for a memorable trip, compartmentalize, put that cancer in the box and take pictures with Mickey.

But if we’re going to have a family meeting, that’s a different circumstance. We’re going to have to be able to open the box. So help serves and hinders in everybody. And that balance changes based on time and circumstance.

Eric 11:58

So going back to the case that you presented at the start, so you’re seeing this person use a whole lot of humor.

Dani 12:05

Yeah.

Eric 12:06

What did you do?

Dani 12:08

Okay, so internally, this was the question in my head, is it serving? Is it hindering? Because a part of me worried, are we about to use humor for an hour together to avoid talking about the fact that this young man’s going to die or not? And so I let him educate me. I sort of called out the coping. I said, you know, I don’t usually start my appointments in laughter. And it seems like humor has been really important for you. And he kind of described that it has been important.

And I said, what led you here? Like, how do we end up here? And he looked at me and he said, Dr. D. Because he didn’t call me Dr. Shaw. He said, Dr. D, this story isn’t going to end in a rainbow. This story isn’t going to end well. My only choice is to make the rainbow right now. And then I knew, and then I knew that he is using this humor to deal with the truth of his illness, not to avoid it. He gets where this is going. And so I let myself laugh with him. And my goodness, did we laugh together.

And I think that’s why by the end of the appointment, we were able to go to equally deep places that were pretty dark and pretty heavy together.

Amanda 13:18

I was going to say, like to build on that, too. To your point, Alex, about the denial piece, it’s. It’s amazing how often when we’re taking care of somebody in the hospital, if you have Say, you know, a family member who is not showing up for visits with the medical team or who is. Is so fiercely pushing back on discussions about how sick somebody is.

It’s often assigned to us that they absolute understand it and that’s why they’re pushing back on it so heavily that that’s actually a sign that people have awareness and insight and how they’re choosing to cope with it looks this way, but they wouldn’t have to push so hard if they didn’t know what they were pushing against.

Alex 14:03

I like that it kind of flips it on its head the way we think about it.

Eric 14:07

Yeah. It’s kind of like when I think about miracles, I used to always worry, oh man, they’re just in denial. But then you recognize eventually over time, oh wait, we’re in prognostic agreement. Like it would take a miracle.

Dani 14:21

A miracle, yeah, that’s right. It’s not in the capacities of what we can do medically. Yeah. Oh, I was just going to say the other piece because we talked about then holding. If we conceptualize everything as coping, it helps us hold empathy. It helps us empathize with the person regardless of how they’re behaving. And I think that the other thing that we can hold empathy for is that when you have a serious illness, it will stress your ability to engage with your normal coping more for some, less for others.

But it takes a toll on our ability to hit our adaptive coping. And we see this all the time on a micro level in our normal lives. Stress makes us cope worse. My 4 year old is a beast. Putting her shoes on in the morning every day. She wants her socks one way, she wants the shoes one way. If I’m rested, if I’m calm, if I’m regulated, I can take a deep breath, I can tell myself, you know what, Dani, one day you’re going to miss her at this age. One day and I’ll work with her.

But if I’m overwhelmed, if I’m stressed, if I’m not regulated, I might pick up those shoes, throw them out the front door and walk away. Because it’s the best that I have to offer her in that moment. And so if we take a step back and think about the level of stress that people experience managing a serious illness, I think it helps us have grace with the fact that even the coping that we’re seeing might be very different from what we would have seen had we known them earlier in their lives.

Alex 15:52

Yeah. Our ability to cope is seriously tested and stressed in the setting of serious illness. And all that comes with it.

Eric 16:02

Well, is it our ability to cope because we’re coping, right. I’m hearing we’re coping no matter what. We’re just using different coping styles under different stresses.

Amanda 16:12

Like what we can access sometimes narrows when we’re under stress. So we may have a broad range of things that we can access in our day to day lives and then sometimes under stress that can narrow. So like I have, I have, I do inpatient work. So I have people who, you know, on in their normal lives, they go hiking, they do yoga, they like to swim, you know, and suddenly they’re hospitalized for weeks at a time and they can’t the kind of coping that they normally would.

So they’re having to draw on aspects of coping that they very rarely had to cultivate, you know, or may have only done for periods of time that were much shorter than that. So oftentimes people are having to build new coping techniques at a time when their resources are lower.

Dani 16:58

So it’s logistically true, Right. Sometimes that we lose the capacity and then it’s emotionally true. Right. Sometimes like, you know, yes, throwing the shoes out the door and walking away is coping. That’s how I managed without screaming at my 4 year old who was coping. But I wasn’t able to take a deep breath and be in a Zen place. There was less in the repertoire that I could touch.

Alex 17:20

Yeah, not as healthy. Potentially harmful elements of that coping mechanism for your relationship with your four year old. I want to ask about how you determine that sort of mixture of healthy versus unhealthy or whatever terms we want to use is for each patient. And Dani, you just flat out like basically asked this patient called it out and spoke to the moment. And I don’t usually start my patient encounters with humor. How can our listeners probe and get a better understanding for that patient in front of them whether this coping style is adaptive or maladaptive or the mixture they’re in.

Dani 18:04

I’ll take this one, but I know I’m going to sound like a broken record with Alex and Eric.

Eric 18:09

Is it going to be formulation, holding space?

Dani 18:13

Yes, formulation, holding space or countertransfer? Eric, you got it. It’s formulation really. It’s formulation. And it’s a hard question to answer because we formulate using different data with different patience. So sometimes my patient is my biggest ally in formulating and I can go back into.

Alex 18:39

Some of our listeners remarkably may not have heard your prior episodes.

Dani 18:43

That’s true.

Alex 18:44

What is formulation?

Eric 18:45

Formulation.

Dani 18:46

Some of the listeners haven’t heard my prior Episodes. But Eric and Alex.

Eric 18:51

Yeah, Alex, what is formulation?

Dani 18:53

What is formulation?

Eric 18:56

Eric said it.

Alex 18:56

I said, holdings, space.

Dani 19:00

I’ll. I’ll take you off the hook only because I love you. So formulation is essentially, it’s our assessment of what is under the surface for the thoughts, behaviors, feelings that we’re seeing on the surface for our patients. So it’s the why. It’s our hypothesis, our theory, our framework for understanding the psychological why behind what is manifesting on the surface for somebody.

Eric 19:29

So when the person comes in with stickers, they’re using humor. The question Dani is asking is, why? Why? Why am I seeing this behavior?

Dani 19:40

Well, and so, and I had a piece of it, right? I’m like, okay, they’re using this to cope. But I wanted to go farther into the why, right? Why are they using it to cope? Like how? Like, what is it serving? What is it hindering? Are they using it to tolerate their situation? Are they using it to stay in the weeds and not look at their situation? And so we ask ourselves that. And sometimes our data comes from the patient.

Sometimes it comes from just our intuitive sense of what’s going on. Sometimes it comes from our idt. Thank goodness we have an idt, and we can keep each other in check and think about these things together.

Amanda 20:21

I think family members are a lot of how we make formulations about how people are coping. Because sometimes my patients are really ill and it’s hard to get much of a history from them. And so sometimes it’s the family members saying, prior to illness, here’s how he or she coped prior to illness, here’s what things looked like. And so we really kind of pull in a lot of data both from what we’re seeing in front of us and from people who’ve known the patient for a lot longer.

Dani 20:50

Yeah, like if you take, for example, Eric and Alex, a patient who is just asking questions, questions, questions, questions. What about the Billy? What about the this? What about the that? You can’t get out the room. There’s so many questions. That’s a form of coping. We’ve all agreed everything we see is a form of coping and we can formulate what is behind that. Well, maybe they’re an engineer and understanding makes them feel rooted.

And the more that we can help them understand and have a sense of control, the better that they’re going to be able to traverse what is being asked for them. Well, gosh, then I’m going to lean into that coping. I will do things that give them control. Say, here’s a notebook I want you to take it and write down your questions as they come up, like a literal form of notebook. Write down your questions for me. I’m going to come back at this time tomorrow. As much information and control I can give, I’m going to give because I think that this coping is helping them stay rooted. But take that same behavior and let’s say it’s somebody else. And the whole team’s been trying to tell them this, Your husband’s going to die.

This doesn’t look good. And. And the wife doesn’t want to think about it, doesn’t want to hear it. So instead she’s like, but what about the Billy? I saw the Billy. Well, that went down by one. And I want you to answer this. And you’re like, oh, gosh, she’s trying to avoid the big picture. And you try to go big picture. And she says, no, I heard that there’s a clinical trial at the Mayo Clinic, and I’m wondering about this. And so you get the sense that these questions, even though they’re coping, even though they’re keeping her psychologically intact, aren’t serving her.

They’re not helping her do the work, you know, she needs to do to get where you have to get. And so then you might lean away from it, and you have to calibrate again. We don’t take a sledgehammer to it. We don’t want to crumble her to pieces. So you calibrate how much she can tolerate you leaning away and what you can do. So you start to wonder with her. You know, gosh, there’s a lot of moving pieces going on. Like, I wonder what your hopes are. I wonder what your fears are. And she gets back to the details, and you lean away again, like. But you’re not, like, ripping her out of it, but you’re calibrating based on your assessment what you want to do with it.

Eric 22:58

I mean, a. That sounds like just amazing palliative care, and it also sounds like a skill that’s probably also very hard to teach during a palliative care fellowship.

Eric 23:11

Well, go ahead, Annie.

Dani 23:12

Well, I was gonna say. I love that you say this, though, because we have. So we have these original Temel studies that said our presence. Palliative care’s presence early on does something good, right? It improves outcomes. And there have been subsequent studies by Greer. Amanda, you might know the literature better than me, but what they found is that one of the most meaningful ways that palliative care presence improves outcomes is that we help patients access adaptive coping yeah. So we’re doing it. I think you’re right, though. We’re not. We don’t have the spotlight on it. We haven’t thought deeply about what it is we’re doing that’s helping with this.

Eric 23:51

No address. Empathy Nurse. Acronym insert. You must be frustrated here.

Dani 23:58

You want to get me in trouble, Eric, you always get me in trouble when you put me on a rant about my feelings about acronyms.

Eric 24:04

So I’m going to go back to the Jennifer Tomel study. The part that I loved about that study is that there was a qualitative study that came out afterwards looking at what did they do, like what was in that syringe in the Jennifer Tamil big New England Journal study.

And if you look what they did early on, the very first things were relationship rapport building and how was somebody coping with their illness? So is this fundamental part about how people are coping, and I am not sure how much we’re teaching trainees, if anything, in palliative care, like to really dive into that coping part. Hell, I couldn’t even answer how to define coping. What do you think, Amanda?

Amanda 24:51

Yeah, I mean, I think so as an idt, kind of member of the team. That’s often what I’m honing in on when I’m working with trainees is what kind of coping are you seeing? Because, you know, especially if I’m working with an MD fellow, they may be thinking, you know, in really complex ways about how do we get this person’s pain under control? How do we get this nausea better? And a lot of what I’m talking to the fellows that I work with about is what are you seeing in the room?

What do you think is happening in the room? What are you seeing in terms of the relationship between this patient and their family? What are you seeing in terms of how we as a team are interacting with them? How much do you think we understand and have replacement rapport with them? So these are the kinds of things that I’m talking, you know, to our fellows about. And I. I think it’s a part of. It’s a part of some of the learning, but maybe not as explicit a part of the learning as it. As it needs to be.

Dani 25:45

Amanda, imagine if every fellow, as you know, they write their pain assessment and their nausea assessment, if every note had a coping assessment and they had to take the time to think through it. Because I agree with you, Erica, it’s foundational. Some would argue it’s the most meaningful thing we do. Why aren’t we explicitly.

Eric 26:04

Yeah. And it was one of the seven major themes from the Jennifer Temel study and what they did early on in the disease trajectory, again, they did not address advanced care planning on that. Like, first part of their visits, they addressed how people are coping.

Alex 26:18

Yeah. And when we asked Jennifer Temel and we asked Vicki Jackson, we asked. Well, we actually. We will ask Vicki Jackson. I think we’re having her on a forthcoming podcast. We asked Areej Al Jawahari, what’s the secret sauce in these palliative care interventions? They all said they think it’s coping. And Joe Greer is going to be on as well in a forthcoming podcast.

And so now the question is, how do we unpack that coping? What is it? How is it that palliative care clinicians are accessing, inquiring, probing, boosting, supporting, giving resources to people to engage in more healthy coping or expand their repertoire of their ability to cope? Those are all kind of fundamental questions.

Dani 27:05

I think the repertoire idea, too. Sorry, Eric, I’m jumping in. But I love the expand the repertoire idea because if we do decide that something isn’t serving, you don’t want to take something away if you don’t have a replacement on the other side. Right. There’s some kind of glue that’s helping keep somebody together. If you’re going to remove it, you better have a new adhesive.

And so we do need to build it. And one of the beautiful things about palliative care is that sometimes we’re the replacement. Like, sometimes our accompaniment is the coping. That somebody is. I have a patient right now. She gets so sad when she goes to social gatherings, because anytime somebody says something to her that feels invalidating, like, they say, oh, how are you doing? But she has cancer. So she’s like, why’d they ask me that question?

Or even if they’re too intense, like, oh, you must be in a rough spot. And she’s like, no, I’m still a person. Every time they make a misstep, it hurts too much for her. So her coping was that she stopped going to social gatherings. That was it. That’s what she could do. And I wanted to get her out back to social gatherings. I had to give her something new. So now the strategy that we use together is she goes whenever they say something irritating, she pictures me in her head rolling my eyes with her, having a laugh.

She writes it down in a little sticky note on her phone, and she saves it for her next appointment. And at the next appointment, she’s like, let me read you the bloopers reel. And we Laugh about it. But because of that, she’s able to go to these social gatherings again.

Amanda 28:35

So we all need a little Dani in our heads.

Dani 28:40

One part of me, not all.

Eric 28:42

Well, it is interesting too, because Alex used the word healthy coping and it sounds like healthy coping. I’m getting this. Like, healthy coping is not necessarily a thing. Right? So I can imagine I just delivered some bad news and somebody is using acceptance as they’re coping. You know what I recognize, you know, I’m going to die. It’s okay. I don’t need any treatment. Like, just let me go peacefully. That’s most important. I go back. But, but, sir, you just have high blood pressure. Like, this is. You’re not going to die from this. Like, so acceptance could be not the best coping mechanism in all forms of bad news or how we deliver things.

Dani 29:28

Oh, my goodness. Imagine if a patient came and said, like, my boss is, you know, sexually harassing me. You would not accept. You would not think acceptance was the most adaptive coping. And that’s why I like to use the word adaptive, because it changes based on person situation. You wouldn’t think that the most adaptive coping.

Amanda 29:45

That’s why context is so critical for coping. Context is important for a lot of reasons. So is how someone’s coping, is it serving them in the context of, say, their illness? Context also can be other things. Coping is also. It also happens within a person’s family system, whatever role they play in their family system. So if they are usually the one person who always handles everything for their family and then they get an illness, they’re going to handle it, you know, because it’s the role they’re used to playing within their family system.

And sometimes it’s really hard for people to break out of those roles when they are encountering illness. It’s also culturally contextualized. So you have someone who comes from a particular cultural background, and coping may be very common in that cultural background. You can’t divorce coping from context. So when we think about our learners, when we think about us as providers trying to assess coping and engage with coping, we always have to make sure that we’re thinking about multiple layers of context.

Eric 30:53

I love that too, because like in the last week, my coping style has been avoidant when it comes to news. Yeah, we just had a big election if people didn’t know. So I just, I have tuned out. I just listen to music now on my ride in and out. I don’t listen to like NPR or anything. It’s just avoidant. But that’s just with this one aspect of my life, I just cannot. One day I plan to listen to news again, but right now, I think it’s the right thing for me. I actually feel pretty good with it. It’s probably at some point gonna be not so good if I completely tune out of the entire world, but.

Dani 31:34

Yeah, that’s right.

Amanda 31:36

That’s right. In this moment in time, in this context that is serving you.

Eric 31:40

Yeah.

Alex 31:41

I remember Susan Block when I was a fellow at Brigham Women’s Hospital. And Dana Farber, she said one of her teaching sessions, you know, there are some patients who are so fragile, and the only coping support they have is denial. Don’t take that away from them because they may crumble psychologically when you pull that away. And that’s sort of. We talk about doing a lot of prognosis. I do a lot of prognosis research. We talk in palliative care a lot about prognostic disclosure, prognostic awareness. And there are cases in which we probably shouldn’t push too hard there because we may undermine that sole support. And until we get to a place where we can provide more supports, we need to get them through.

Dani 32:33

And does you want to talk about talking about talking about it?

Amanda 32:36

Yeah. So a lot of times when we’re in sensitive territory, one of the most kind of therapeutic ways in is to talk about talking. So rather than delving directly into content, talking about the idea that I think, you know, I’m feeling like it might be time to have a conversation maybe about what’s the head, or maybe about what’s worrying you, or maybe about what’s worrying us as your medical team. How would you feel if we were to have a conversation like that?

Who would you want to be there? How would we need to put some guardrails in place to make sure that you felt safe enough to have some of these conversations or at what point? This is one of my favorite questions to ask when someone says, no, I don’t want to talk about that right now. You know, how would you know when it would be time to talk about that? At what point would you imagine a conversation like that could be helpful? And then you start building a roadmap, you together with the person you’re working with, so that when you enter into that sensitive space, you’re doing it together, you’re doing it in a partnership, and you’re doing it with parameters already created.

Eric 33:42

I love that.

Alex 33:43

I love the talking about talking about it.

Eric 33:46

Yeah. It takes invitation. That whole idea of inviting people in the conversation, one step so much better. And deeper.

Amanda 33:55

I was talking to someone today whose wife is doing poorly, getting sicker and sicker. And today was a day of getting scans. And when we sat down, it was pretty tearful. And I said, you know, some people in this circumstance want to think a little bit about the what ifs. What if the scan comes back and the news isn’t good? What if, you know, what if I have to start thinking about how to talk to my kids about what’s going on here. There are other people who say, in this time of uncertainty for these next few hours, I think I just need to avoid the worst case scenarios and just wait for the information to come back.

And if the information comes back, then I can make a decision about which way I want to go. He said, I think that second one is me. I don’t know that I’m ready to move into the what ifs just yet, but I think if I get this data back, I think I’ll know whether it’s time or not. So we talked about talking. We set some parameters, and we talked about how he would know when it was time. So now we have an agreed upon kind of plan to move forward together if by tomorrow he has that data.

Dani 35:02

The beauty, too, is, I think, Amanda, now you brought us into this domain of tools, right? Talking about, talking about it is a tool. And what, you know, medical practice assessment precedes plan. And so that’s why we wouldn’t talk about talking about it with everybody. Some people would feel really like, babied and kind of belittled that we did it like that. But that’s why it’s so foundational to have a formulation that roots us into why we’re choosing the tools, the communication tools, the interventions that we’re choosing. Where is it coming from?

I had someone run a case by me just this week, and they said, the patient said to me, I know I’m going to die. I’ve put that in a small box. And I put the box down here at the base of my skull and I’ve closed it and I’d like to leave it there. And the person who was coming to me for consultation said, well, how do I get them to open up the box? And my first question was, why? Like, why do you want them to open up the box? And I’m not saying it would be right or wrong to open up the box, but they hadn’t thought through it.

Did they want to open up the box because of something in them, as the clinician, some idea they had about what palliative care should look like, what coping should look like, or was there a formulation about the patient, whether they felt like opening the box would be helpful? Because I couldn’t really advise them one way or the other until we had gotten to that point. I have strategies for opening it, I have strategies for keeping it closed. Right. But we have to understand why we’re choosing to do what we’re doing and who it’s in service of.

Eric 36:29

So in that situation, hypothetically, if Dani or Amanda were in the room, what would you your next step after the person said, I’m going to put this right here in the back of my head.

Amanda 36:41

So part of what I think about when you’re at that assessment point about how might this be serving, how might this not be? Sometimes I will say to people, it sounds like having that box back here feels like a safe way to be. It feels like it’s helping you kind of get through your day to day stuff. Are there things that are important for you to be thinking about or talking about that keeping it in the box is preventing you from getting to like, are there important conversations?

Is there work that would be important for you to do that we’re not tending to because the box is closed back here. That’s more kind of talking about talking without totally being explicit about it. But it’s trying to understand, is there anything you’d be doing differently? If we have this box out and we were looking at things and some people will say, no, look, I’ve already done my will, I’ve already told my kids, I want you to take this piece of furniture and I want you to take the other one.

So putting it back here means it’s helping keep my anxiety about death in check. But there’s nothing concrete I would need to do by pulling that box out. There are other people who say, yeah, there are things that would be important to me, but it’s not time to look at those yet. And those may be the scenarios in which you might be able to kind of expand that toolkit a little bit with somebody about how and when that work would be important to get to. I don’t know, Dani, if you have other thoughts about that.

Dani 38:05

Well, I was going to say with this specific case, with this trainee, they got at the. The trainee essentially said, I want to fill out the advance directive with them. But as we looked further into it, the trainee felt like the template for doing an advanced directive that we in medicine had taught him because we do like algorithms and templates, was that he needed to open up like the feelings, the hopes, the fears. We taught him to do hopes and fears.

He was trying to do what we told him to do. And so. So I was like, well, let’s throw that template out of the window for this patient. You just need the advance directive. You know, that he knows he’s dying, so go there and make it really transactional. All right. I know you want to keep it in the box. Let’s keep it in the box. I just have to check through a couple things with you to make sure everything’s aligned the way you would want it, and then we can move on. Would you want this?

Yeah. No. Yeah. And do it. But we know why we’re doing it, right? It’s not like we’re doing it because we want to avoid going to those feelings, which you can imagine a clinician doing, getting super logistical, because they don’t want to go there. We’re doing it because we think it’s in service of this patient. That’s where we left it. I’ll have to tell you how it turns out when I hear back.

Eric 39:15

I love it, too, because there’s. There’s no necessarily right answer here. Like, there’s no ABIM test we could take that says, oh, option B is clearly the correct answer on this board test. Is that you. You’re coming up with an idea of what may be the underlying reasons. Maybe you’re inquiring, what, what, like why. Why does he feel it’s so important to keep this under a lockbox in the back of his brain? And then you’re coming out like, what do I want to do with this information? Is this adaptive? It Is it not? Is it helping him in this current situation? Is it not? And then thinking about next steps, where do we go from here? Does that sound right?

Dani 39:55

Yeah.

Amanda 39:56

And I think also being mindful, especially when we are. When somebody’s in the medical system, we are one of a tapestry of providers that people are working with. It also may be that they’ve opened that box with five other people and they just don’t want to open it with the sixth, you know, So I think also kind of keeping in mind that we are. We’re one point of interaction with people in a larger. In a larger network.

Dani 40:23

I’m going to channel my inner Amanda moment right now and give you wisdom that she’s dropped on me and pretend that it’s my own. But I think the other. The other thing to remember is that we are people in the room, too. Like, we have our own coping styles, and that can really help us and get in the way if we’re not in touch with that. So, you know, I, for example, humor is one of my copings. It’s so easy for me to go there. And that’s why there’s a ton of laughter in my clinic, really. It’s one of the most powerful ways I palliate. And I have to be careful not to get in trouble. Right. I have to be careful not to accidentally collude in a case where humor isn’t working so well for somebody or if there’s a couple.

Right. Oftentimes we really relate to the way one person in the couple copes and not so much the other one. And we do the relationship a disservice by leaning too much into relating to one or the other. So it almost feels a little bit like love languages. You know, we all have love languages. These are our coping languages. And when there’s there aligned, there’s pros and cons. We can go there together. We can. In a good way or in a not so good way. And when they’re not aligned, there’s pros and cons. I know some colleagues who, if that patient had come in cracking jokes, it would have been a very uncomfortable room. Humor isn’t their go to coping. Like, it would have felt strange.

Alex 41:51

I’m getting. This is so complicated. Like, you know, people have many different coping styles and each coping mechanism that they have to employ may have maybe adaptive for them and maladaptive in different proportions. And that they may be able to access some of these under some circumstances, but not stressful circumstances, that there’s a dyadic interaction with the provider, who also has their own coping styles that may relate, resonate, or have dissonance with the style of the patient or the caregiver or the couple. To get even more complicated. This is complicated. Couldn’t we just come up with on the spot a mnemonic like Cope that it summarizes.

Dani 42:36

You had me. You had me. My mouth was ready to say, you pretty much nailed it. And then you lost me.

Eric 42:45

I was going to say, can we just make a drug to.

Alex 42:48

That’s right.

Eric 42:50

Cobaminumab.

Alex 42:52

It’s gotta be some sort of benzo.

Dani 42:55

No, I mean, I mean, if I were to paraphrase what you said, because you did nail it. What you said is humanity is complicated. And you’re right, humanity is complicated and we do it ourselves and we do our patients a disservice if we try to pretend that it’s not. And I’m not going to say anything more about mnemonics. But I was baiting you. I know you, you were. You’re just trying. But I do think, I do think your point also, Eric, is right. There’s not one way, there’s not one answer. We can’t give you a. This is what you do with denial. I actually tried to write a paper about the different. I was like, I want to define the different coping mechanisms for palliative care so they know what’s projective identification, they know it’s denial.

They know this. And the journal said, as long as you say what to do with each one. I’m sorry, I have a hard line there. Like, I can’t go there. And eventually we, like agreed to part ways because they want us to know what to do. But you, we. There’s no one right answer. But there is a consistent way of approaching, which I think you guys are both getting at, right? You non judgmentally observe someone’s coping. You wonder about the impacts of those coping. You prioritize maintaining their psychological integrity above all else. And then you mindfully think through how to serve their coping in ways that they can tolerate, that are calibrated based on person, moment and setting.

Amanda 44:18

And I will put in a plug too, for the importance of understanding our own coping. What are we comfortable with? What are we not, to Dani’s point about love languages, what’s our coping language that we feel most at ease with? Because we are likely to see someone who has a coping mechanism that’s different from ours as maladaptive coping, quote, unquote. And so understanding what ours is is the first step because we’re the lens through which we see our patients and their coping. So I want to put in a plug for that.

Eric 44:51

And is that like when you’re under stress, what are. Because I have all of these different coping styles like the ones you go to under stress or how should I think about that, Amanda?

Dani 45:02

Well, let me turn it on you really quick though and give you one more quiz because this is a word we’ve spoken about. There’s a psychological word behind this.

Eric 45:11

Counter transference.

Dani 45:13

Yes. Eric, you’re on fire today. Yeah, countertransference. A little bit of what Amanda is talking about is countertransference. When somebody doesn’t cope the way that we would want them to cope, we experience countertransference. And yeah, there’s a range of how we cope, but there are certain crayons that are in our crayon box and there are certain crayons that aren’t So I can’t tell you which of your crayons you’re going to pull on, but I can tell you avoidance.

Eric 45:41

Avoidance. It’s mostly avoidance. It’s different shades of avoidance in my.

Dani 45:46

Crayon box have a total different. My. My mom’s cousin, our family is Lebanese. This gets at Amanda’s point about culture. My mom’s cousin had cancer, and they literally did not tell the woman she had cancer at all once she died believing that she had an infection that she was going to get better from. And my family thinks this was a huge success. They do this a lot in Lebanon.

And they were like, she wasn’t even scared and Americanized doctor that I am, I was mortified. I was like, this is so wrong. I had a huge countertransference to it because it was so far from my crayon box of what I thought was in the realm of acceptable coping. And I need to do a lot of looking within to understand, like, okay, where are the hard lines? What’s coming from me? What’s coming from them? Amanda, you could probably go deeper into countertransference than I ever could.

Amanda 46:40

But no, I mean, I think it’s foundational to how we enter any of the spaces where we meet patients. And one of the things that we talk about is you can look for where countertransference is coming up, where you are practicing differently or having kind of strong reactions to people in rooms. And, you know, I think about our families who are maybe kind of loud grievers. You know, we have some families who, you know, context wise, culturally, you know, grieving loudly as a part of the process.

And in our kind of like Western medical world, you know, a lot of people feel really uncomfortable with that and feel like, let’s get that behind closed doors. Like, they’re out in the hallway crying. Like, let’s get that behind closed doors. And so, once again, that’s our discomfort. This is a family that’s grieving in the way that feels right to them, but that’s our discomfort. So recognizing when we have our own flares of discomfort that often comes from a place of countertransference.

Eric 47:42

Well, we could go on for hours, I think. I thought that was brilliant. We’re going to have some show notes, so we’re going to have a link to the Formulation podcast that we did. Dani actually just published a great paper on Formulation two, which we’ll have a link.

Dani 47:56

Amanda was an author on that.

Eric 47:57

Amanda was an author, too. Great. That was a fantastic paper. I had to read it twice to Understand what? Like the full concept. So I’m finally getting it, Dani. I am getting it. So we’ll have links to this on our show. Notes. Check out the website. Amanda, Dani, thank you for being on the podcast. Before we end, I think Alex, what’s the song called again?

Dani 48:17

It’s okay is the song.

Eric 48:19

It’s okay.

Alex 48:27

I moved to California in the summertime I changed my name Thinking it would change my mind

Alex 48:41

I thought that all my problems they would stay behind I was a stick of dynamite and it was just a matter of time oh, dang. Oh, my Now I can’t hide Said I knew my myself But I guess I lied it’s okay it’s okay it’s okay it’s okay if you’re lost we’re all a little lost it’s all right it’s okay it’s okay it’s okay it’s okay if you’re lost we’re all a little lost it’s all right it’s all right it’s all right it’s all right it’s all right it’s all right.

Eric 49:31

Wonderful. Amanda, Dani, thank you for being on the podcast.

Dani 49:36

Thanks for having us.

Eric 49:38

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

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