BTK_PC.E5_Clinical Challenges in Surgical Palliative Care - Goals of Care Conversations_Recording

It's the University of Washington Surgical Palliative Care team back again for another episode of Behind the Knife. I'm Lindsay Dickerson joined by Dr. Katie O'Connell, Dr. Allie Haruda, and Dr. Virginia Wang. We heard from listeners that they enjoyed our prior episode using a simulated patient scenario to discuss navigating serious illness communication.

So we've decided to try that same setup again to talk about how to best approach goals of care conversations. Allie and Virginia, can you help summarize where we left off last time? Absolutely. Our scenario last time was about a young man who fell rock climbing and sustained a TBI and a severe spinal cord injury that resulted in quadriplegia.

We simulated a challenging conversation with his mother, Brenda, and we focused on two skills. Firstly, using a headline statement to initiate the discussion, which as a reminder is a succinct, clear sentence that conveys a medical update and what that information means. And secondly, using NURSE statements.

NURSE stands for Name, Understand, Respect, Support, and Explore, to provide empathic

responses throughout the conversation and help facilitate information processing. Anything to add, Ellie? Yeah, that was a great summary, Virginia. And I think it's the perfect jumping off point for setting up our scenarios today.

Like Lindsay said, we'll be focusing on goals of care discussions, and particularly those that occur at a time of transition, as many do. Maybe your patient's a previously healthy person who was in a devastating car crash, and now they're critically ill in the trauma ICU. Or maybe you have a patient who has a known cancer diagnosis, but was pursuing curative treatment, newly found to have metastatic disease.

We found that the VitalTalk framework of REMAP is a helpful tool for these types of situations. And Virginia is going to tell us a little bit more about REMAP. Great. So, REMAP stands for Reframe the Situation, Expect Emotion and Empathize, Map Values, Align with the Patient, and Propose a Plan. So, let's talk a little bit more about that.

REMAP is a talking map. It's not always a linear progression from one step to the next. It's helpful to start with R, the

reframe, which again is the headline that conveys the seriousness of the situation and gives information about the change in status. The patient needs this information to then make decisions.

Next, you can elicit their goals. This is the mapping value step, where we learn more about what's most important to them given this new situation. And then we use these pieces together to propose a treatment plan that upholds the patient values and also makes sense in the clinical situation. Expecting emotion and aligning are skills that you'll often need to weave in throughout the conversation and use multiple times.

I know we'll be running through a practice scenario, but Dr. Connell, maybe you can share just a few example phrases just to prime our listeners for the conversation. Yeah, so for a reframe headline statement, an example would be something like We're in a different place now knowing that the cancer has spread.

Again, the cancer has spread is the information and the meaning now is that we're in a different place and we need to talk about what's next. For expect

emotion and empathize, you would go back to those nurse statements that we practiced before. Something like, I know this is not what you were hoping to hear.

For mapping the future, I'd like to use something along the lines of, when you think about the time that you have left, what is most important to you? And then when we talk about aligning, you might say something like, what I'm hearing is that being alive for the birth of your granddaughter is a priority.

And then finally, proposing a plan, you incorporate both the patient's values and your medical expertise. So, based on what's important to you, I suggest we focus on treatments that will help keep you alive long enough so that you are present for your granddaughter's birth. Thanks for all those great examples.

Just a few additional comments before we get started. First, I want to note that Remap is helpful in situations, both when you've already built a relationship with the patient and there's a shift in their course, as well as when it's

your first time talking to the patient, but you know the scenario is different today than it was previously.

The other thing I just want to name is that these topics can be difficult for patients to discuss, and sometimes we need to move the conversation at their pace. You can't force someone to face their own mortality and think about what they want their death to look like, or how they want to spend their remaining hours.

You can't just force them to think about those things. It can go a long way for a reporter to ask permission before sharing difficult news, over approaching sensitive topics, and before making a recommendation. I agree, Allie. I might use something like, Is now a good time for us to share some updates? As a way of asking permission.

This offers the patient and family a sense of agency in the conversation and also braces them for what's coming next. Thanks Dr. O'Connell. All right, I think we're ready to jump into our simulated patient cases. Our first will be a pre operative scenario, and the second will be a post op scenario in the ICU.

We'll spend a little bit less time overall discussing the

nuances of the first two steps of REMAP, the headline statement and responding to emotions, since we have already covered that in a previous episode, although of course they'll be key components of the goals of care discussions as a whole. Allie, can you describe our first scenario?

Sure. So you have Carrie Roberts. She's a 65 year old female with a history of advanced cirrhosis and recurrent hospitalizations She's now admitted with a perforated duodenal ulcer that would require emergent surgery. The surgical team is concerned about her poor prognosis due to her underlying condition and wants to discuss options with Carrie.

Virginia will be acting as Carrie, the patient, and Lindsay will be the surgical resident on call. We're going to jump into this scenario after Lindsay has already done introductions, assessed Curie's understanding, and is ready to deliver a medical update. Now on for the rules of our role play. First rule is that all surgeons hate doing role play.

The second is I will be moderating this role play, and that means that if

the participants get stuck or there's a great learning point, I will time them out. They're also allowed to time themselves out if they get stuck and we'll discuss and then replay the scenario. All right. So Dr. Dickerson, let's start with our first scenario.

So Carrie, it would now be an okay time for me to share what we know so far from the workup. I, I guess, okay. Okay. So, your CT scan shows that there's a hole in your intestine, and knowing this on top of your liver disease makes me worry that this is a life threatening problem. Oh my god. That's so scary. I don't even know what to say.

Okay. I can only imagine how scary this must be and how difficult it must be to hear that. Time out. All right. So, let's just name the skills that were used in that part of the scenario. One was that Dr. Dickerson first asked for permission to share

the new information, giving the patient some agency and control in the conversation.

And then she delivered the headline statement, which was information plus meaning. There is a hole in your intestine and the meaning is that it is probably a life threatening or life limiting issue. The emotion that the patient expressed, which we knew was going to come after delivering serious news, was then met with an empathic statement by Dr.

Dickerson of, I can't imagine how this feels. All right, team. So next we're going to go jump back into the scenario. And at this point, we're going to talk about how do we map out the patient's goals? Gary, we're going to have you pick up with your reaction to the empathic statement. Okay. Well, of course it's scary.

What are we going to do about it? I think this is a great time to pause and talk about what you want. Have

you ever thought about the types of treatments you would want if you got really sick? Well, I am really sick. I've had to be in the hospital every month this year. I've gotten a lot of medical treatment and so far it's kept me alive.

So I want everything done. Okay, thank you for sharing that. Can you tell me a little bit more about what you mean by I want everything done? Well, whatever you need to do to keep me alive. That's that's what I want. Okay. What I'm hearing is that living as long as possible is what's most important to you.

Yes. Okay. So if it's okay with you, then maybe we can talk about what the plan would be with that in mind. Yeah, please. So knowing that you have a hole in your intestine, which we think is could be a life threatening illness and on top of your liver disease, what we would do first is we would do a surgery to fix the hole in your intestine.

And then I anticipate that after that surgery you'll likely have a prolonged stomach pain. Day in our intensive care unit or the ICU during which time you'll be on multiple

life sustaining treatments and we anticipate that you'll likely have complications after the procedure, which could even include dying during that recovery process.

As long as you've tried everything you can to keep me alive, I can live with that. Okay. I appreciate you sharing what's most important to you, and we will move forward with that plan. Thank you. Time out. All right, so let's talk about the skills that were just used in that scenario. First, I just want to name that phrase, I want everything done, because we hear that so frequently in surgery, and what that means to different people is different.

And so it's really important that when we hear that phrase, we stop and explore what it means to that person, just as Dr. Dickerson did in this scenario. By doing that, she was able to uncover that the patient Carrie is a vitalist and she prioritizes longevity

over everything else. Once Dr. Dickerson had mapped that as her value, she was able to take that information and incorporate it in her treatment recommendation, which was surgery and any other additional life prolonging treatments that would be needed.

If I had the patient said, well, you know, everything done means I want everything done to take my pain away and I don't want to be in the hospital anymore. Then the treatment recommendation would have been completely different where she wouldn't have even mentioned surgery or an ICU. It would have been, let's talk about intensive comfort focused treatments.

Let me tell you what that entails. One more thing I will add is I think from the patient standpoint, I appreciated that there was a genuine desire to understand what my values were, rather than trying to push me in one direction or another, based on information that you had about me medically. I think that it is It's really important as

we go through this process and map patients values to enter that process with a genuine curiosity, because sometimes our patients surprise us and the conversation can go in a completely different direction than we may have anticipated.

Yeah, I, I agree and I think that that is one of the, the more challenging aspects and I felt that during our role play. I find that it's more challenging if you're hoping to steer the conversation in a certain direction, but when I just responded to your wishes and goals with a plan that directly aligned with those, then it became a lot more simple because there's not really any steering.

It's just eliciting your values and then making a plan based on those values, regardless of what the medical team's opinion is. Both great points. Let's talk about one common pitfall, which is use of the a la carte menu when we're talking about life sustaining treatments. We're going to use a branching point from the scenario that we had previously to demonstrate use of the a la carte menu.

Dr. Dickerson, can you pick it

up from, have you thought about what types of treatments you would want if you got really sick? So have you thought about what types of treatments you might want if you got really sick? Well, I am really sick. I've had to be in the hospital every month this year. I've gotten a lot of medical treatment and so far it's kept me alive, so I want you guys to do whatever you need to to keep me alive.

I want everything done. Okay, so maybe I can go through the different options then. Okay. So that way we know what, what you want. So would you want us to do surgery to fix the hole in your intestine? Absolutely. Okay. And then I anticipate that you'll need to be admitted to the ICU afterwards for weeks to maybe longer.

Would you want a prolonged stay in the ICU? Of course. Okay. If it will keep me alive, then yes. And oftentimes in the ICU, and in your case, I expect that you may need multiple life sustaining treatments. So would you want dialysis, which does the job that your kidneys do and filters your blood? Yeah, if my kidneys aren't working, then

yes.

Okay. And you may not be able to be extubated after surgery, so would you want a prolonged intubation in the ICU? And sometimes that even means that people need a surgery to put the tube directly into their throat. Okay. If it'll keep me alive, yes, I want it. Okay. What about feeding tube? And we would put a feeding tube either down your nose or sometimes you need to put it into your stomach to get nutrition.

Would you want that? No, I don't want a tube in my nose. I don't want artificial nutrition. That sounds terrible. Okay. And blood transfusions? Yes. What about pressers to support your blood pressure? I think I've had those before. Yeah, I would want them again. Okay, all right, time out. So I think we've all heard the use of this a la carte menu to ask patients exactly what types of treatments they want.

However, hopefully you can see by this scenario that it doesn't make sense. The analogy that I like to use when thinking about this is how a

person might go to a financial advisor, pay them for their advice, and what they're going to ask is, what is your risk tolerance? Thanks. Based on that, they're going to offer all the options.

And that may be investing in crypto, and that may be investing in bonds, or real estate, or stocks. The a la carte menu is saying all those things and then, okay, well you choose which one. And that's what really we're doing here. The patient does not understand how to incorporate these individual treatment options into the overall picture.

They're depending on us to say, based on your goals, this is the treatment that we would recommend. You could hear how the patient, Carrie, was going through and yes, yes, yes, she wanted all the treatments except artificial nutrition, which does not make sense, right? If she's gonna go through all these other things, that has to be a piece of the pie.

And just as a reminder, as surgeons, we're not obligated to offer life sustaining treatments that

don't align with patients goals and are potentially non beneficial to the patient. So, you don't have to feel like you have to offer someone every single thing that's available if you know that it's not going to get them to where they're hoping to be.

Any comments from either of you from the scenario? Yeah, I interestingly in that second part doing the a la carte menu, which we were kind of playing as what not to do In a way, it feels a little bit easier As the provider because you get to sort of check off the specific things the yes or no to these items But then when I got to the end of it, I realized that I didn't really have a sense of What Carrie wanted on the whole, we didn't really get to that longevity focused goal that we got to in the first scenario.

So while it may be a little bit more straightforward initially to give those checklist items, we didn't get to where we did at the end with the

first scenario. Yeah, and I would say from a patient perspective, it felt very good to have agency over these kind of individual yes, no questions. It was very cut and dry, very straightforward.

And you could ask me, do you want this specific thing? And I could say yes or no. But I think having seen the other side of this, that the patient doesn't necessarily have a full understanding of what each of those components means in the global picture of their care. Thank you. And that can make putting it all together very difficult, which I think is one of the biggest pitfalls of the a la carte menu, in addition to what Lindsay mentioned about not having really explored the patient's values or goals.

I think one of the things that's tempting about the Ollocart menu is that we really want to make sure that we're doing the right things for our patients. And I think part of that is making sure that they understand and that they have all the information they need. And I think the reality is it's not.

It's so difficult for patients to fully understand the nuts and bolts of all of the different surgical and technical

options. Sometimes when I hear people say, I want everything done, I want to live as long as possible, and that's all the information I have, I might use something like an even if statement to help them prioritize their values and elicit more information.

So if Carrie here is saying, I've already had so much, please keep doing everything you can. I might say something like, okay, I'm hearing that more time is most important to you. Even if that means going through a big operation and being in the hospital for a long time. And that way, I can sort of check myself that I'm not just hearing Carrie say, I want everything done and assuming I know what that means.

I've elicited a little bit more that she is okay with going through an operation. She is okay with being in a hospital. She is okay with people taking care of her. And that can help us feel a little bit more comfortable with those decisions as well. That's a great point, Allie, and one of the things that I noticed too in our conversation is that Virginia playing Carrie knew what she wanted, but sometimes patients don't know what they wanted.

So one of the techniques that I've used before or heard other people use is giving different values

that some patients might express. So saying something like, for some people, living as long as possible is what's most important to them, and for others, it's comfort and spending time with family that's most important.

Where do you fall on that spectrum? And that's a nice, still open ended way to elicit those values by giving examples. Great. Lindsay, I would also add a third box to the spectrum that you described, which is independence, which is somewhere in the middle there, because a lot of older adults really prioritize living independently, completing their own ADLs, and knowing that that is their top priority, we wouldn't recommend that.

Great. certain life sustaining treatments such as CPR, because the chances of them getting back to living independently after a cardiopulmonary arrest with CPR are very, very low. All right, that was a great discussion. I think we're ready to move on to our second scenario. Robert Thompson is a 68 year old who underwent

emergency surgery for a ruptured abdominal aortic aneurysm.

Although the surgery successfully controlled the bleeding, he suffered prolonged hypotension, kidney injury, and complications requiring ongoing critical care. After a week, his condition remains poor with multiple organ systems failing. The surgical team believes his chances of meaningful recovery are extremely low and wants to discuss goals of care with his family.

Virginia will be acting as Jennifer, Robert's daughter and healthcare proxy, and Allie will be the ICU doctor leading the goals of care conversation. As in the last scenario, there's already been introductions and an initial conversation that has started and Allie will start from sharing the news and giving the headline statement.

So, basically, Jenna, the surgery went well, but your dad's still really sick, and I just don't think it's likely he's going to have a good outcome. Well, you guys have taken such good care of him here, and we so appreciate everything that you guys are doing to keep him alive, and I know he's going to pull through this.

Yeah, and, you know,

we're doing everything we can, but Like I said, he's, he's really, really sick. You know, his blood pressure was really low, his heart's not pumping well, he's on the breathing machine, his kidneys are failing, I just, I just want to make sure you understand all that. Yeah, but my dad's a fighter, you know?

He's, he really is going to pull through this. I have a lot of faith. Mm, okay. I just, I don't want to give you any false hope. He's, he's still really critically ill, and he's, he's not doing very well. Well, we're hoping for a miracle. You Okay, so let's pause here and talk about aligning. This scenario that just played out demonstrated a common pitfall in goals of care conversations, especially in the ICU, which is to inadvertently create this tug of war between the patient's family and the ICU team.

And anytime we're talking about people at the end of life, this notion comes up of the patient fighting, fighting for life. And the medical team will respond by continuing

to emphasize how sick they are because they feel like the family just isn't getting it. One thing I want to point out is the use of the phrase, we're hoping for a miracle.

That phrase really used to trigger me before I really understood what people were saying. And what folks are actually saying is that we understand how sick he is, and we're hoping for a miracle that he can actually get through this process. So, once you can kind of retrain your brain to hear that, Oh, they actually have been processing what we've been telling them, then that will help you align with the family a little bit better.

Dr. Ruta, why don't we rerun this scenario from the top and see if we can't demonstrate an aligning statement for this family. So, you know, as you know, the surgery was able to stop the bleeding, but he's still really sick in the ICU with a lot of his organs needing

support, which means that we're worried he might not make it out of the ICU.

Yeah, but you know, you guys have been taking such good care of him in the ICU and we so appreciate everything you've done to keep him alive and I have a lot of faith that he's gonna pull through this. I hear how strong your dad has been for so much of his life. Sounds like this is a really big change to see him like this.

Yeah, you know, he's never really been this sick, but he's a fighter and we're hoping for a miracle. Yeah, we're hoping for one too. Time out. I think sometimes we have this idea of not wanting to give patients false hope. And using these align statements can be ways to acknowledge what they are saying and hoping for, because we are hoping for that too, but we're not saying that's definitely going to happen.

We're not promising something that we think is unlikely, but you can see that it saved a lot of time and allowed us to move the conversation forward by acknowledging Jenna's responses without trying to convince her to believe or hope for something different.

Yeah, and as Jenna, playing a family member, I felt a lot less like I was being beat over the head continuously when we were sort of aligning on this, versus in the previous run of this scenario when I felt like I was just being hammered with bad news and it was not really the tone of conversation that I was hoping to have.

And I think that showed in the misalignment between the priorities or values that I was putting forward and the message that the medical team was trying to convey. Yeah, and like Dr. O'Connell was saying, you basically already acknowledged with the phrase, we're hoping for a miracle, that you know that he's not in a good place.

And so I wonder if in this scenario with Allie aligning with you, if that will then allow you to be more open to the next part of the conversation because you feel like what you want for your father is understood by the medical team. Yeah, 100%. And I think it's no secret that there's some mistrust with the medical community.

And I think especially, you know, certain communities in our area have different

religious beliefs or cultural preferences. And so when we try to beat them over the head with the information, like you said, and we try to convince them to think something different or believe something different, It can lead to those seeds of mistrust growing so that when something happens, an expected ICU complication, sometimes people can view that as, we weren't really trying, we weren't giving the best care, we're withholding treatment options.

And I think aligning is a way to really bring their voice into the conversation and build that trust for, like you said, if something happens down the line. I'm curious, Allie, after you've aligned with Virginia, where do we go from here? How do you progress the conversation after that? I usually use my align statement and pause and then use that opportunity to explore some more.

And so I'll then ask another question, you know, we're hoping for a miracle too. I wonder, has your dad ever talked about what kind of medical treatments you would want? Or something like, we're hoping for a miracle too. You know, gosh, if your dad were

here right now, what do you think he would say about this?

and sort of use that to get back into the exploration and the mapping of values so that I can hear more about, given this situation, what tangible things can we gather. All right, so maybe we can start that scenario again from the top, so the same scenario with Robert and the daughter Jenna who you're talking with, and we'll play a little bit of a different angle this time.

Sounds good. All right. So Jenna, as you know, the surgery went okay. They were able to stop the bleeding, but we're seeing that he's still really sick and a lot of his other organs are starting to fail, which makes us worry that he won't leave the ICU. Well, you guys have been taking such good care of him in the ICU this week, and we so appreciate everything you're doing to keep him alive, so we have a lot of faith in you, and we know he'll pull through this.

Yeah, I appreciate that, and it sounds like this is really different from what he was like before he came into the hospital, and it can be really hard to see him

this way. Yeah, you know, he's never been this sick before, but he's a fighter, and I feel like you guys are gonna get him through this. I wonder, Jenna, what do you think your dad would say about all of this if he were able to talk to us now?

Oh, he would never want any of this. I don't think. Tell me more about that. Well, he's just, you know, been really independent his whole life, and I have such a hard time even convincing him to try to go see the doctor. So, you know, he doesn't really like to be poked and prodded, and I think this is really different.

Yeah, it sounds like he's been really strong and independent and he maybe wouldn't be too happy with us doing all this to him. Yeah, maybe not. And it's, you know, it's a lot for you to go through, too. I wonder, is there anything that's kind of on your mind or worries that you have? I think the most important thing for me is that I don't want him to suffer.

Thanks for sharing that, Jenna. I can tell how much you care about your dad. What I'm hearing is that we're

hoping that he'll pull through and that he's been really strong and independent his whole life. And I'm also hearing that maybe he wouldn't want all of this life sustaining treatment and that it's really important to you that he doesn't suffer.

Mm hmm. Is it okay if I talk a little bit more about what some other treatment options might look like? Yes, please. So right now, as you've seen, we're doing everything we can to keep your dad alive as long as possible. And sometimes people say, gosh, I don't really want to go through all of that anymore.

And instead we decide to transition to intensive comfort focused treatment. What does that mean? What that means is that we continue all of the treatments that are really aimed at alleviating your dad's suffering and keeping him comfortable. Sometimes that means treating pain. Sometimes that means treating anxiety.

We focus on the emotional, the spiritual, and the psychosocial pain. And we stop doing the things that we think aren't contributing to that comfort. Okay, well, you've given me a lot to think about, so thanks for telling me that there was another option out

there. I really appreciated hearing that from you.

Time out. Okay, so I just wanted to point out a couple things with that scenario. First, it is really beneficial for us to talk about comfort focused treatments with families who have loved ones that are very sick from the very beginning. A lot of times when we wait until they are in multisystem organ failure or have prolonged critical illness, The families are actually thinking about transitioning to comfort focused treatments, but they feel guilty or scared about bringing it up to the doctors, and by us talking about it as a valid treatment option, it really normalizes the situation.

I also wanted to note the way that Dr. Haruta described intensive comfort focused treatments, specifically by starting with what we do for patients with that treatment option, followed by things that we don't do. You're welcome. We stopped checking vital signs, we stopped poking people for blood, we stopped

running other tests, and really prioritized time with family over all of those things.

So it helps people understand that the medical team is actually still continuing to provide a lot of treatments to their loved one instead of this notion of withdrawing care, because we never withdraw care. We're actually caring intensely for folks near and at the end of life. Great. Are there any final thoughts?

Oh, actually, there was one more thing I wanted to say sort of in line with you talking about comfort focused treatments. You'll notice that in presenting that as a treatment option, and what we do in the even ifs or the values triad, is that we're always normalizing both treatment options. We're not biasing patients towards one is the right one, or one is the better one, or if you cared more you would choose this thing.

And that really allows people, I think, to be more open, because like you said, sometimes people are a little bit afraid or ashamed to bring up certain questions. The last thing I want to share is just to

acknowledge that these are difficult conversations. There's a lot of emotion, there's a lot of new news, and patients and families often just need more time to make decisions.

I think one of the best and most important things we do as providers is to really support them and guide them through the process. It's really normal for families to have a gap in prognostic awareness. We see the patients every day. We chart their labs. We see their slow decline or whatever their trajectory is.

And families often aren't tracking quite the same way. And so sometimes when we have the family meeting or we share the news in the reframe, this is the first they're hearing of it. And they just need more data points that they are experiencing themselves to be able to get to that place where they're ready to make a different decision.

And so sometimes our job is just to map out what things might look like, to check in, to give them milestones to look so they can track with us. So today we focused on using the REMAP framework to guide our goals of care conversations. And as a reminder, since repetition is the key to adult learning, REMAP stands for

reframe the situation, expect, emotion, empathize, map values, align with the patient, and propose a plan.

We talked about headline and empathic statements, how to elicit patient goals and values, how important aligning is, and nuances in recommending a goal concordant plan. And with that, we'll say thank you for joining us in Dominate the Day.