Time Stamps

Show Notes

This episode was based on a 2020 NEJM paper on code status. Figures are drawn from that paper, and we highly recommend the article!

 

  1. The 3 types of conversations
    1. Information Gathering: generally a brief conversation that happens on admission. Appropriate for:
      1. Stable patients who would likely benefit from CPR.
        • “Have you ever had a conversation about what to do in an emergency with your medical team? …For example, have you ever discussed CPR or intubation? … CPR is a medical procedure that we use in an emergency to try to restart your heart if you were to die. And intubation is the way that we support your breathing in that process… Do you have any thoughts about this?” – Dr. Jacobsen
          • The goal is to find the small % of patients who have strong, consistent preferences AGAINST resuscitation.
        • “Thank you for talking about this with me. I’m not anticipating any emergencies or any problems, but if that did happen, I would recommend CPR for you. I think it could help.” – Dr. Jacobsen
      2. Patients with established preferences to limit resuscitative measures (ie DNR, DNI, MOLST form). The goal is to confirm that these documented preferences are still valid.
        • “Your records show that you made an emergency plan with your outpatient doctor to focus on comfort and allow for a natural death. This means that we would not use chest compressions to start your heart or use a breathing machine. Based on my medical assessment, I think we should continue with that plan now. Does that sound right to you? We will do everything else we can to help you get through this.” Jacobsen et al, 2021
      3. A patient who may be unlikely to benefit from CPR/intubation, but the patient is stable and it isn’t the right time for an in-depth conversation (prognosis unclear, family not present, etc)
    2. Shared decision making
      1. Useful for patients with advancing illness, where the balance of risks and benefits of resuscitation depend heavily on the patient’s goals and values
      2. Preparation: Learn about the patient’s prognosis
        • Understand the acute prognosis (what brought them into the hospital?), and the prognosis of the patient’s underlying health problems (ie: for a patient with cancer, are treatment options available?)
        • Best case/worst case/most likely can be helpful to understand prognosis
          • “In the best case scenario, say all our treatments go according to plan, there are no complications. What do we think this patient’s prognosis would be in that situation? And then in comparison, the worst case: this treatment doesn’t work, her functional status continues to decline, she isn’t able to get out of bed, she gets a UTI. What does that look like? And then given that, given that we kind of have some sense of the best case and the worst case, what do you think is most likely?” – Dr. Jacobsen
      3. Conversation tips
        • Understand the patient’s functional status and goals
          • “What makes a good day for you? What does a good day look like? … because if someone has metastatic cancer with a lot of brain mets and they say that… lucidity and time at home and independence are their goals, something like a long resuscitation is probably inconsistent with that.” – Dr. Cooper
        • Hope/worry statements can be helpful to describe concerns that resuscitation is unlikely to help a patient reach their goals
        • Provide recommendations based on the patient’s prognosis, values/goals, and the likelihood that resuscitation will help them achieve those goals
          • “I use the word recommendation and I ask permission to give the recommendation before I give it. And I always couch what I’m saying in what the patient has just told me to make it as patient-centered as possible. So, ‘Is it alright with you if I make a recommendation based on what I’ve just heard? It sounds to me like what’s most important for you and what gives you the most livelihood is being able to interact with your family, sit at the dinner table, play with your grandchildren, sit out on your deck. I think that if we got to the place where your lungs really couldn’t work on their own, I’m not sure that a breathing machine would bridge them to a place where you could get back to any of the things that you love to do so much. And so I would recommend that, if we got to that point, we would focus on making you as comfortable as possible, and on taking the best care of you that we could without that machine.’” – Dr. Ellenberg
    3. Informed consent
      • Useful for patients where decompensation/death are imminent, and resuscitation is more likely to cause harm (suffering, prolongation of dying process) than to provide benefit
      • Conversation tips
        • Start the conversation by asking about the patient’s understanding of their illness, their goals and values, what they hope for, and what they are afraid of
        • Share concerns that resuscitation is unlikely to help the patient reach their goals
          • “What happens sometimes in these conversations is patients may say, ‘I want to live longer. I want to get better’. And part of what’s hard about these conversations is us having to say that we hear that that goal is important. And we’re also worried that given how sick they are, that CPR is unlikely to be able to help them live longer or live better.” –  Dr. Jacobsen
        • Think with the patient about what medical interventions may be consistent with the patient’s goals and values
          • “Given that CPR is unlikely to be helpful, thinking with them, what else might be important? Because there’s still time and prolonging time may not be possible, but having quality time may be possible, having family come visit may be possible, getting home sometimes is possible, not suffering is often possible. And so thinking with patients about what they do want, and then making sure that we align the care plan with those goals and values, I think is comforting for people because it’s a conversation again about what we can do. It’s not just like we’re going to take away this procedure and leave you with nothing.” – Dr. Jacobsen
        • Avoid describing graphic details about CPR/intubation to discourage patients from opting for full code status
          • Focus instead on helping the patient understand how sick they are, and the interventions that would be in line with their goals
        • Remember that this can be difficult to hear – pause as needed to allow patients time to process, and acknowledge the emotions that arise
  2. Giving recommendations 
    1. It can be challenging to provide recommendations and clear guidance
      • Preferences are often value-laden 
      • Outcome can be irreversible (i.e., death)
      • Situation is usually not imminent 
      • It’s usually other clinicians (ER, ICU teams) who end up performing the procedure
      • Fears about harming the relationship 
    2. However, patient surveys show that over two-thirds prefer to make a decision with their clinicians, compared to only about 10% that wanted to make the decision solely on their own. 
    3. Simulated choice experiments show that the physician’s opinion matters more to patients than any other piece of information given, even when presented with concrete details about benefits and risks about an invasive procedure. Patients value our recommendations!
    4. A 2014 review in JAMA from Bernacki et al found strong evidence that end of life and advance care planning conversations do not increase a patient’s level of depression, anxiety, or hopelessness.
    5. Sometimes, patients don’t accept our recommendations
      • “If you’ve given your best recommendation and a patient says, ‘No thank you, I’d like to try everything’, sometimes what I say is just simply, ‘Thanks for talking about this with me. And perhaps what we can do is just keep talking about things. I’m hoping that you get stable and that things go well for you. And I am worried. So I’ll just check in with you from time to time. And maybe we can talk more as we need.” – Dr. Jacobsen
  3. Advance care planning is a process 
    1. Patient preferences often change over time, evolving with different states of health.
    2. By having these conversations periodically, we help patients think about their goals and values, and imagine what they would want if they got sicker
  4. Mistakes
    1. Not bringing up the “I’m worried” conversation early enough
    2. Going in with the “Get the DNR” mindset
    3. Accepting a DNR status without making sure the patient understands what that means
      • “Many patients don’t want to be prolonged in a vegetative state, but they don’t understand what we’re talking about are helpful treatments that could help them get through an episode. And so we have to be very clear. Sometimes even just asking the follow-up question, ‘If this were reversible and we thought we could get you better and off the machine in five days, would you want that?’ And then many patients are like, ‘Oh yeah, that I want that’. Um, so it’s just a matter of kind of probably not going far enough.” – Dr. Jacobsen
      • Tips on readdressing a DNR order in a patient who would likely benefit from CPR:
          1. “ ‘I’ve just been going through your records and I noticed you had a conversation earlier… about CPR and resuscitation. And I wanted to talk a little bit more about that.’ … ‘Can you tell me more about that conversation and what you understood?’ And then you’re going to get some kind of answer like, ‘Well, I don’t want to be kept alive on machines’. … I might say something like, ‘I hear that you don’t want to be kept alive on machines. Can you tell me a little bit more about that?’ Because I want to know what she’s afraid of, right?’ ” –  Dr. Jacobsen 
          2. Once you know why they’re making that decision, then you can better address your own concerns: ‘I hear that you don’t want to be kept alive on machines. I hear your grandmother really suffered when she was on a ventilator for a year, that you’d never want that. What I’m seeing medically is if there was an emergency, a machine might help you to get through it. And what I’m worried about is that if we don’t try, we may miss the opportunity to get you better. Cause I think there’s a good shot at getting you better.’ –  Dr. Jacobsen
    4. Language to avoid
      • Ambiguous language, ie “pass naturally” instead of “die”
      • Numerical prognostic values (ie, the patient has 6 weeks to live). Instead, use ranges, like days to weeks.
      • “Need”
        • “I try not ever to use the word ‘need.’ I try not to say something like, so if we got to the point where you ‘needed’ a breathing machine, where you ‘needed’ chest compressions, would you want them because I don’t want a patient or a family member to think about this as something that they do or don’t need. I think it’s something that they might or might not want to try, but couching it in that way almost primes them to say, ‘well, if I need it, of course I want it’. So I tried not to think about it in terms of something that they need, but in terms of something that might be appropriate. When I learned that one, that was really a turning point in how conversations went.” – Dr. Ellenberg
    5. Insufficient Documentation
      • “DNR” and “full code” are simple orders that may not reflect the complexity of the patient’s wishes. For example, for a patient who elects for DNR order – would they want everything short of CPR/intubation? Are they transitioning to comfort measures only?
      • Document the values that inform the patient’s decisions (ie, “Full code, but patient wouldn’t want prolonged life-sustaining measures if unlikely to have a full neurologic recovery”)

Transcript

Introduction 

Margot: I’ve been a doctor for 4 years now, and I’m still trying to find the right way to talk about code status. As a resident, I’d often have these conversations with the help of a phone interpreter, and as I heard my words translated into Bengali, or Spanish, or Mandarin I’d so often see my patient just get more and more confused. These days I’m a nocturnist at a cancer hospital. Many of my patients have widely metastatic disease, and they’re no stranger to these conversations about life and death but they’re hard conversations to have, and sometimes it just feels like I’m giving my patient an unwanted reminder of their mortality. I wanted to know how to get better, and given that we ask interns to start having these conversations on day 1, I can imagine I’m not the only one who’s had trouble finding the right words. So today we’re going to talk about code status. Welcome back to At the Bedside – I’m Margot

Jafar: I’m Jafar

Tamar: And I’m Tamar

Margot: I’d like to introduce Dr. Juliet Jacobsen, a palliative care physician and the Medical Director for the Continuum Project, an MGH initiative to support and promote the practice of generalist palliative care.

Dr. Jacobsen: I’ve been at Mass General. Oh, for about 15 years now. And, um, I’ve been watching people struggle with code status conversations for that long, and I’ve certainly struggled with them myself.

Margot: We’ll be focusing on conversations about code status that happen on admission to the hospital, and revisited when an inpatient is getting sicker. To really capture the breadth of these conversations, we also spoke with physicians who talk about code status with inpatients on a regular basis.

Dr. Riches: I’m Jamie Riches, I am one of the overnight hospitalists at Memorial Sloan Kettering cancer center. 

Dr. Ellenberg: My name is David. I trained in pulmonary and critical care and I just finished a fellowship in hospice and palliative medicine.

Dr. Cooper: My name is Avi Cooper and I am a pulmonary and critical care medicine, faculty physician at Ohio State.

Margot: We’ll be spending most of our time talking about the approaches that Dr Jacobsen and her co-authors outlined in a fantastic NEJM paper from 2020 on code status.

Dr. Jacobsen: I started thinking that when people were struggling in code status conversations, it often seemed like they didn’t know which conversation they were in. That actually there were two or three types of conversation. And that if you knew that type of conversation, if you knew what you wanted to say, then you might say it differently if you understood the goals of that conversation.

The 3 types of conversations

Margot: The three main conversations that Dr. Jacobsen will be walking us through are information gathering, shared decision-making, and informed consent. Information-gathering is generally the brief conversation we have when we’re admitting someone to the hospital. Shared decision-making is a longer conversation, where we try to figure out whether CPR makes sense in light of a patient’s goals and values. And informed consent is an approach for patients who are at risk of decompensating, but probably wouldn’t benefit from CPR and intubation. So how do you decide what kind of conversation to have?


Dr. Jacobsen: I think the, the first step is really taking a step back and looking at the big picture. And in that I’m asking myself really what’s going on with this patient’s health. And the question is, is this somebody who would likely benefit from CPR? So is this somebody who’s healthy, who’s got a stable condition who has a strong, functional status, or is this somebody who’s very unlikely to benefit? Is death from a progressive illness imminent? And kind of once I understand those two poles, then, you know, probably a majority of people fall somewhere in between, but, but that’s, that’s how I’m thinking about this conversation and about my patients is kind of where are they in that spectrum? Because that helps me decide what kind of conversation I want to have.

Information Gathering

Jafar: Ok, so let’s break it down and look at each kind of conversation a little deeper, with some examples to make it clear. We’ll start with maybe the easiest one: Information Gathering.

Dr. Jacobsen: The first kind of conversation that an intern might have in the middle of the night with a stable patient, right? So this is, this is the time when you want to have an information gathering conversation, uh, which is really exactly what it sounds like, right? You’re going to learn about the patient without asking them to make decisions because it’s in the middle of the night and they’re stable and decisions can wait to the next day. And your role is just to make sure that you have the right code status overnight.

And so there’s a few different variations of this type of conversation. The first one is a patient who would likely benefit from CPR, right? So they have a chronic stable illness. They have a good performance status. And really the goal, your goal overnight is just to make sure that this isn’t a patient who has really strongly held consistent beliefs that against CPR. And that’s, you know, a small percentage of the population, maybe that’s 5% or 1%, but there’s, there are people out there whose values are, um, that they really don’t want intensive medical intervention, no matter what. And we want to find those people. 

Another goal you might have overnight is, um, a patient who has already has a code status, right? So they come in with a MOLST or a POLST, or there’s a little note from their PCP and a chart somewhere that says DNR/DNI, and your role as a responsible physician is just to simply record that that preference is still valid. That that’s still what they want, and you don’t want to have the whole conversation again, but you want to make sure that you’re doing the right thing by that patient. 

And then the third type of patient that you might see overnight is maybe a patient that you’re kind of worried, like maybe they are pretty sick. Maybe they are getting weaker and you’re not sure whether CPR is going to be helpful or not. Your gut tells you that the burdens may outweigh the benefits, but it’s not the right time, right? The PCP is not there. You don’t know the, exactly the prognosis for that type of cancer. It wouldn’t be, you’re not the right person. It’s not the right place, the family’s not around. And so even though you think that patient needs a deeper conversation, you’re not going to have it overnight. 

Jafar: Ok cool, so Information Gathering is basically confirming what’s expected or known, or testing the waters for a deeper dive conversation later on. When we get to the Shared Decision Making or Informed Consent type of discussion, we’ll need some more time and preparation, but for now it’s just about keeping it brief.

Dr. Jacobsen: This is the kind of conversation I don’t necessarily find a chair for. Right? The other two, I know I’m going to sit down and we’re going to make some decisions and it’s going to take some time, but this is a, a less formal conversation. It happens at the end of your interview. And you’re, you’re really going to just approach a patient with curiosity and, and try and understand where they are. So you might begin this conversation by saying something like, you know, have you ever had a conversation about what to do in an emergency with your medical team? And then you might follow that up. You might say, for example, have you ever discussed CPR or intubation? And I’ll say that the vast majority of our patients know CPR and intubation are just from TV and kind of general knowledge, but I’ll often describe it anyways. And I’ll just say, you know, CPR is a medical procedure that we use in an emergency to restart your heart if you were to die. And intubation is the way that we support your breathing in that process. And that way, we’re very, very clear about what we’re talking about.

And so then you can just ask your patient, do you have any thoughts about this? Because some patients, you know, their uncle died and was resuscitated and it was a powerful experience and they would definitely want CPR no matter what. And so you’re going to learn a lot from people if you ask just about what their experiences are and what they’ve already talked to with their doctors. 

Jafar: While we may want to do some exploration here, the main point is to keep it simple. For stable, healthy patients, it’s ok to give them some clear guidance. 

Dr. Jacobsen: For patients, when I think CPR could be helpful, I would just recommend CPR. So I might say something like thank you for talking about this with me. I’m not anticipating any emergencies or any problems. But if that did happen, I would recommend CPR for you. I think it could help. Right. And so that’s your medical opinion. And that’s because you’ve thought about this patient, you thought about their illness, you thought about the functional status and this is a treatment that you think would help. And it’s important for us to share that with patients and in some ways habituate patients to our recommending treatment about CPR, that it’s not kind of  just, do you want CPR, do you not want CPR, even when patients are healthy, we may make recommendations about a medical procedure like CPR.

Jafar: On the other hand, when patients already seem to have made a clear, documented choice against CPR, we have to be careful not to undo a lot of that hard work that’s already been done. We all want to do the right thing and not skim over something as important as code status, but you don’t need to start from square one.

Dr. Jacobsen: You might say, I’ve been looking through your records and they show that you’ve already made an emergency plan with your doctor to focus on comfort and allow for a natural death if something unexpected were to happen. Does that sound right to you? This means that we would not use chest compressions to restart your heart or a breathing machine. Based on my medical assessment, I think we should continue that plan now, is that okay? So you’re just summarizing what you’ve read, making sure that you got it right. And you’re confirming that you’re going to continue with that plan.

I think that’s useful for patients too because I think it unburdens them. They don’t have to go through the whole decision-making process again. These decisions are hard and they’re painful for people. I think there’s something about becoming a DNR where we acknowledge our mortality more deeply. We acknowledge that some treatments are probably not going to be helpful for us anymore because we’re getting sicker. And so that can be painful for people. And when we ask them to do it over and over and over again, it could be easier just to say, forget about it. I’ll take it all, right? Then to kind of really hold fast to a decision that one might have made with a trusted physician or, or other clinician. So anyway, I think by just confirming that, we unburden our patients of have having to do that over and over again.

Jafar: So to sum up: the Information Gathering conversation — basically, that middle of the night, stable  admission conversation — is just about confirming documented wishes or full code for healthy folks, or testing for prior thoughts about code status that can be explored later. And if you get caught up on that last point and start opening up a deeper conversation too quickly, just remember that it’s always ok to stop and readdress things later for a stable patient. It’s really knowing your limits and knowing what kind of conversation you’re ready to have at that moment that makes communication successful, so there’s no shame in taking a pause.

Dr. Jacobsen: Sometimes we may intend on having a more narrow information gathering conversation and then the patient opens things up too. Right? So we’re not always fully in control of the conversation. I would say that, um, one thing that can be helpful if you’re in that position where you’re, you’re realizing that this is a bigger conversation is just this idea of transparency with patients.  You know, that we can say we’ve started talking about CPR and intubation. And what I’m realizing is that this is really a much bigger conversation about where you are with your illness and what this means, um, that your family should be involved, and that I’m not even sure I have all of the information to, to help guide you through some of this decision-making. So I wonder if we could take a pause and, um, I can talk to my attending and we can meet again and maybe have a different kind of conversation where we can address some of these questions, um, in a more thought out way. So I think we can, we can be transparent, right? If we find ourselves in a place where it’s just getting bigger than we anticipated.

Shared Decision-Making

Tamar: So on that point, the next type of conversation Dr. Jacobsen walked us through is shared decision-making. This kind of discussion is for those less clear-cut cases – where the patient does have an underlying illness that may be progressing, and it’s not as obvious if they would benefit from CPR and intubation or not. But there’s a little prep work to do before we start.

Dr. Jacobsen: So shared decision-making and informed consent are, are variations of a more difficult conversation. And these are conversations where you definitely want a chair. And I would say that for both of those, having a sense of the prognosis is important. When I’m talking with medical teams about thinking about the future of patients and what the most likely prognosis is, a useful way to think about that is this idea of best case, worst case, most likely. Because what happens when we, when we look at ourselves, when we study ourselves and we study how we prognosticate is that we’re often overly optimistic. Just I think it’s our, our nature to be hopeful. We believe in our treatments, we like our patients. We want good things for them. And so all of that biases us a little bit to be more positive about prognoses. 

So rather than just picking one number, which we know is probably likely to be a little bit optimistic, it helps to have a range. Right? And so you can think about, okay, in the best case scenario, say all our treatments go according to plan, there are no complications. You know, what do we think this patient’s prognosis would be in that situation? And then in comparison, the worst case, this treatment doesn’t work, her functional status continues to decline. She isn’t able to get out of bed. She gets a UTI kind of, what does that look like? And then given that, given that we kind of have some sense of the best case and the worst case, what do you think is most likely?

And that type of thinking just helps us have a little bit of a more broad perspective. It probably helps us to be a little bit more accurate, cause we’re considering more than one time point. And also when we do end up having a shared decision making conversation with patients, we can speak a little bit more easily to a range of options because we’ve actually done that thinking for ourselves. And we’ve thought through, what’s this gonna look like in the best case, in the worst case, and what do we think might happen. So that’s just some of the pre-work that’s helpful to do before you go in the room. And you can do that with – I mean, I always do that, right? I’m always more accurate if I speak to one other person, because then we can kind of average our biases. I can get their sense of things.

Tamar: So thinking about prognosis is key. What else do we need to know to have these conversations? 

Dr. Cooper: I think it’s impossible to have these discussions without taking into the context of where the, the person’s baseline functional status and their goals.

Tamar: And Dr. Cooper also gave us some pointers on how to start to try to understand the patient’s values, goals, and preferences. 

Dr. Cooper: I had a palliative care attending, when I was resident who always used to ask this wonderful question, um, what is a good, what makes a good day for you? What does a good day look like? And so, I think asking questions like that, because you don’t know the person finding out what they like to do with their time and what that looks like for them in their live can be really helpful. Because if say someone has, metastatic cancer with a lot of brain mets and they say that they want to, they need the lucidity and time at home and independence or their goals. Something like a long resuscitation is probably inconsistent with that. Um, and so I think finding out initially what their goals are, um, what a good day looks like for them, it can be really helpful as we transition into some of the specific decision-making.

Tamar: And Dr. Riches brought up another important point when thinking about prognosis.

Dr. Riches: I think in cancer care, particularly, there are sort of two prognoses to understand, and there’s a prognosis as it relates to the primary malignancy and the treatment course, which is always fraught with uncertainty by it, by its nature.

And then there’s, I think what the sort of more important issue to this conversation, which is the acute prognosis, right? So where is this particular illness most likely going and how will this patient with all of their major or minor comorbidities and performance status and know, the way the wind is blowing, how will this patient respond to the treatment that we have to offer right this minute? And that becomes the most, that’s just becomes the most important thing, because there are patients whose cancer is really well controlled and die from completely different things.

Tamar: She then uses prognosis — both her understanding and the patient’s understanding of it — as the foundation for her conversation: 

Dr. Riches: I try to categorize the patients as people who have had these conversations before and people who seem to have not had these conversations before. And for the people who have had these conversations before, I try to get a sense of what their process has looked like in the past one when discussing this with other providers. If there’s never been a conversation before and it’s, you know, relevant to the, I think it’s easier when it’s relevant to the acute issues. So, you know, your breathing looks great to me right now and the level of oxygen that we have you on makes me feel comfortable and definitely reassures me. However, if we needed to escalate that oxygen to a higher level and your lungs, weren’t able to support your, your breathing and give you enough oxygen, we would have to talk about some different things. Have you ever discussed this before? 

Tamar: And as we begin to understand our patients’ goals, we should also provide some guidance. Dr. Cooper laid out one good way to go about that:

Dr. Cooper: Acknowledging kind of the statistics of success of CPR is really important. And I think if your assessment is that a resuscitation attempt is unlikely to meet those goals that have been laid out to say that. I think hope and worry is a really helpful way to frame, um, these discussions. Acknowledging that we, we hope that, um, resuscitation would meet, would meet those goals, but that I worry they won’t and trying to land land there, if that’s what I really think is, is the reality based on my critical care experience. And so I find the hope and worry – that duality – acknowledging the hope and aligning with that. But if, but then I’m kind of presenting the worry. If the family feels like they really are focused more on, on that, on, on the hope part of it, which is, which is understandable, even if my own medical assessment is not consistent with that, we go all in on hope and that’s okay. 

Tamar: And here is how Dr. Ellenberg approaches the conversation, emphasizing the importance of providing a recommendation since our knowledge and experience can help guide the decision:

Dr. Ellenberg: I use the word recommendation and I ask permission to give the recommendation before I give it. And I always couch what I’m saying in what the patient has just told me to make it as patient-centered as possible. So, “Is it alright with you if I make a recommendation based on what I’ve just heard? It sounds to me like what’s most important for you and what gives you the most livelihood is being able to interact with your family, sit at the dinner table, play with your grandchildren, sit out on your deck. I think that if we got to the place where your lungs really couldn’t work on their own, I’m not sure that a breathing machine would bridge them to a place where you could get back to any of the things that you love to do so much. And so I would recommend that, if we got to that point, we would focus on making you as comfortable as possible, and on taking the best care of you that we could without that machine.”

Tamar: So again, when it’s less clear cut if a patient would benefit from resuscitation, the shared-decision model is about making sure the patient knows the acute and long-term prognosis of their illness, teasing out our their values and preferences, and then providing our recommendations. 

Informed Consent

Margot: The third kind of conversation is informed consent.

Dr. Jacobsen: So this kind of conversation, um, is when patients are very sick and we’re worried, death is imminent. And we in our hearts believe that CPR and intubation are very, very unlikely to provide benefit and will most likely kind of increase suffering or prolong the dying process. And so we want to share that information, which is really prognostic information with our patients and their families. And the reason we want to do that is so that they can have a deep understanding of what’s happening with their own health and so that they can make informed medical decisions.

Margot: These are situations where it’s appropriate to recommend against CPR and intubation. That can be a tough thing for patients to hear, so it’s important to ground the conversation in the interventions that would benefit the patient.

Dr. Jacobsen: With all of these conversations, we always would start with the patient, right? So understanding what the patient knows already about their illness. And then sharing our own worries about the small likelihood of benefit and the great likelihood of harm of CPR. We always, we just want to ground these conversations in patients, goals and values and understanding kind of what they’re hoping for and what they’re worried about, and what’s most important to them. And I think, um, what happens sometimes in these conversations is patients may say, I want to live longer, right? I want to get better. And, and part of what’s hard about these conversations is us having to say that we hear that that goal is important. And we’re also worried that given how sick they are, that CPR is, is unlikely to be able to help them live longer or live better. And so really being able to say that directly to people. And then think with them, you know, given that CPR is unlikely to be helpful, um, thinking with them, what else might be important, right?

Because there’s still time and prolonging time may not be possible, but having quality time, maybe possible having family come visit may be possible, getting home sometimes is possible, not suffering is often possible. And so thinking with patients about what they do want, um, and then making sure that we align the care plan with those goals and values, um, I think is comforting for people because it’s a conversation again about what we can do. It’s not just like we’re going to take away this procedure and leave you with nothing. It’s like, we know that CPR and intubation aren’t going to be helpful, but there are things that we can do. And sometimes it’s even treating stuff, right? Like I’ve had patients in the emergency room and we decide together that that CPR and intubation aren’t within their goals, but maybe trying to get better from this pneumonia is, right?

And maybe getting a little bit of fluid off so that they can breathe. Maybe having a paracentesis could help. So it doesn’t mean that we stop being doctors or we stop thinking about a medical plan. It’s just that certain treatments, certain, very aggressive treatments aren’t within the scope of care anymore. And so that’s really what we’re negotiating with with our patients. Sometimes I call it gentle care, you know, I say, you know, we’re gonna make a plan for gentle care. Um, and that means we’re going to do things that we think are gonna help, you know, and anything that we can think would be helpful. We, we’re going to talk about it with you. Um, and we may keep checking your labs. We’d like to get you up tomorrow and walking around to make sure your body stays strong. But we know that if you were so sick that your body were to die, that that CPR and intubation wouldn’t be helpful for you.

Margot: By focusing on the interventions that help, it makes it clear that the patient isn’t choosing between CPR and no care – there’s so much we can do for patients who elect to be DNR. There’s another approach people often take, where they try to dissuade patients from electing for a full code status by explaining how painful CPR and intubation can be. Talking about the graphic details is well-intentioned, but it shifts the focus away from the patient.

Dr. Jacobsen: Maybe I’ll say a few words about the ribs. So you’ll, you’ll hear people talk about, um, kind of breaking ribs and kind of the, kind of, um, maybe the violence of the CPR procedure sometimes. And I always tell people those conversations, they come from a really good place when, when clinicians are saying that it’s cause they’re really worried about their patients and they’re trying the very best that they can to convince their patient not to do something that they don’t think is going to help. Right? And so we kind of described the graphicness of this with the hope that we can save our patients from this procedure, that’s unlikely to provide benefit and is likely to provide harm. But what I would suggest is that a different way to have that conversation with patients and families, rather than describing what’s going to happen during the procedure, is to talk to the patients about how sick they are and help them understand that their bodies are really beginning the dying process and that these treatments are not going to be able to fix their underlying problem. You know, if you have heart failure or if you have lung disease or if you have a cancer, CPR and intubation can’t fix those problems. And so then we’re left with really this, this process or this medical procedure, that’s going to prolong their suffering with, without benefit. It’s not going to help them get home. It’s not going to help their heart get better. It’s not going to take away the cancer. And so I think if we can describe to patients the state of their own illness, um, and support them emotionally through those conversations, then they’re, they’re more likely to be able to make a medical decision that’s consistent with really the reality that their body is experiencing.

Margot: The advice to avoid graphic language was a theme that came up frequently in our interviews.

Dr. Ellenberg: I try not to get into very scary images about the nitty gritty. So I don’t talk about breaking ribs and cracking chests and jamming tubes down the throat. I talk about it much more from the 30,000 foot view of what that procedure would mean in context.

Dr. Cooper: I don’t like to talk about electric shocks. I don’t like to talk about chest compressions. Um, I, I, you know, cause I think that scares people and I think it, um, I just don’t think it’s necessary to make these decisions to be graphic about what it means to resuscitate someone. Um, and cause I, I think the point, the point of these conversations is to ensure that the patient’s values and goals and preferences are honored.

Margot: So what are some phrases you can use instead?

Dr. Cooper: I use the D word, you know, I say, what, what are we going to do if, if they die, I just kind of put that out there and I use the word, cause that’s what we’re talking about during the cardiac arrest, it is death. Um, so I put that out there and I just say,  I want to talk to you about what we’re going to do if your loved one dies. And I, you know, like I said, I avoid jargon. I try to avoid graphic descriptions. I usually say things like, um, you know, do we try to, um, restart their heart? Do we try to get it beating again?

Margot: Sometimes, we recommend DNR but a patient decides to remain full code. That can be tough.

Dr. Jacobsen: When someone’s really sick and we make a recommendation and they don’t accept it. It can feel hard. Right. Cause we’re pretty worried that we’re going to do harm. And we want to respect patient’s autonomy and, um, their choice. And so I will say that that happens to all of us. It’s not always a matter of skill. It has to do with a lot of factors, including how much patients are able to take in their illness and, and process it and cope with it and make decisions. And so I would just say that if you’ve given your best recommendation and a patient says, no thank you, you  know, like I’d like to try everything. Sometimes what I say is just simply, you know, thanks, thanks for talking about this with me. And perhaps what we can do is just keep talking about things.

I’m hoping that you get stable and that things go well for you. And, um, I am worried. So I’ll just check in with you from time to time. And, um, maybe we can talk more as we need. So, you know, it’s, it’s indicating that this is a process. Um, we’re not abandoning anybody. Uh, we’re going to keep talking about it and that you care somebody, right. And that you want the best for them. Um, both and there’s kind of different kinds of best, right? There’s you want to respect their decisions and you also don’t want to harm them. And so you’re, we’re often just trying to figure out how to do that together.

Margot: So those are the three kinds of conversations. To recap – information gathering is a quick check-in. Shared decision-making is a deeper dive into the patient’s goals, so we can figure out whether CPR and intubation make sense for them. And informed consent is appropriate for situations where patients are unlikely to benefit from CPR, so we recommend DNR and describe all the interventions that would be in line with their goals.

Giving recommendations 

Jafar: There are a few things that apply to all conversations, so we’re going to spend the rest of the episode talking about them, focusing mainly on the struggles clinicians face in doing these conversations well. One major challenge we face in discussing code status is working up the courage to give clear guidance to patients. Sure, it may be easier to just lay out all the information in front of them and wait for a decision, but that’s only doing half the job.

Dr. Jacobsen: I think one of the main messages is this idea that we don’t just ask people what they want about CPR, that we learn about what they already know, understand their goals and then make recommendations. So I think that’s the, probably the most important switch in how we think about our language. And it’s not only our language, but it’s our role, right? As clinicians that, we’re not simply offering options, but we’re actually taking our patient by the hand and walking with them and guiding them through some of these decisions. Cause they’re hard decisions and they’re emotional decisions and we have medical expertise that can help us help our patients make these decisions.

Jafar: And this fits with what patients tell us they need during these crucial conversations about their healthcare. Patient surveys show that over two-thirds prefer to make a decision with their clinicians, compared to only about 10% that wanted to make the decision solely on their own. And even when presented with concrete details about benefits and risks about an invasive procedure, simulated choice experiments show that the physician’s opinion matters more to patients than any other piece of information given. Basically, we have a lot of influence on this process! And when you think about it, it’s pretty obvious–no patient would leave a surgeon’s office without getting a recommendation around the surgery in question. So why is it so many of us hesitate at giving a recommendation around code status?

Dr. Jacobsen: There’s lots of different reasons for this. I think the one that comes to mind first is this idea, um, that this is kind of a more valued-laden decision than other decisions. Um, and because death is going to come soon, if someone makes this decision, right? If they decide, um, to be DNR and then they have a code, they will die. And so it just seems like because it’s related to dying and this imminence of that, that it feels like a high stakes decision as we shy away from it a little bit. I’m certainly guilty of that. I want that to be the patient’s decision, not my decision, because it feels like it’s very personal. 

The second reason, um, is this, this, even though it’s high stakes, it might not happen right away. Right? So we may have a conversation, but then a patient may never code, or that might happen a month from now. And so the actual decision doesn’t feel quite as urgent as if, say, we had to make a decision about an antibiotic and they start the antibiotic. And so there’s this way that the, the actual decision is deferred and it feels less urgent. And so I think that also helps us, um, maybe just shy away from making recommendations about it. 

The other thing, and it’s related to that, is that we’re often not the one doing the procedure, right? So we make a decision with a patient and family they’re full code, but we’re not the ones that have to code them, right? That’s probably not going to be us, most likely it’s not going to be us. And so we’re a little bit separated from the actual implementation of the decision. And I, and I think if we were the ones that were doing the code, we might feel more urgency to make that recommendation. But since we’re not, we don’t. 

The final reason I think we hesitate is we worry about rupturing our relationship, right? We worry about putting it on the line, making a recommendation and it can feel a little awkward. I’ve done it, you know, I’ve made my recommendation and the patient’s like, no, thank you. Um, no, I don’t want that. And so we worry about, okay, what’s going to happen next. And am I still going to be able to be aligned with you in a relationship and guide you through medical care if we have this big rupture where I make a recommendation and you don’t take it, and what does that mean for us? And so I think we, we get nervous about that and we pull our punches a little bit and we don’t, we soft pedal and we, we don’t offer a recommendation.

Jafar: Yea it’s true, these are really heavy topics to put on a patient, and our judgments about their possible mortality may not be well received. But while we may worry about harming the relationship, it is helpful to know that we’re probably not harming the patient. A 2014 review in JAMA from Bernacki et al found with strong evidence that end of life and advance care planning conversations do not increase a patient’s level of depression, anxiety, or hopelessness. It can definitely feel unpleasant, but ultimately we’re trying to empower a patient to make the best choice for themselves, and we can use that motivation to give us the confidence to dive in when it’s needed. 

Advance care planning is a process

Jafar: And you know it’s ok if a patient doesn’t take up our recommendations right away. Thinking through these decisions is a process for most patients, and so like all goals of care issues, patient preferences end up being a moving target, growing and changing with different states of health. Even the most clearly articulated values about quality of life can be tricky.

Dr. Jacobsen: And it’s so nuanced because the other thing we know is that what’s acceptable to people changes, right? So I, to tell you, it’s only acceptable if I can drive and do everything for myself, and that’s the only acceptable quality of life. And yet if I got sicker, I may adapt to not being able to see or not being able to walk. And after a year, might rate my quality of life. It’s equally high as it is now. And so I think that’s one of the, one of the trickinesses of advanced care planning. It’s not really about understanding exactly what these values are–it’s much more about thinking with people about the possibility of dying, asking them to kind of contemplate them, their mortality. It’s hard. Like I do it sometimes just as an exercise, like imagining what it would be to die or to be close to dying and how that feels.

But we invite our patients into these conversations so they can practice thinking about that so that when they are very, very sick and they have to do it, they’ve had some practice, they’ve had some practice feeling those feelings and processing what that means for them. It’s not the first time ever that they’re looking at their own mortality. And so I think the process of advance care planning is much more about that practice than about knowing, you know, what is exactly is acceptable quality of life to you. What exactly do you want if you get sicker, because we know it changes.

Jafar: Part of this process is for the clinicians too–getting to know the patient behind the illness, such that we can make the right recommendations for them when the need arises. And this is maybe why studies on advance care planning often have mixed results, because often we erroneously focus on choices – like full code, DNR, etc. – rather than people. Even while we’ve focused this episode on that ultra filtered, pointed decision about code status, we hope we’ve shown how deep and iterative the process leading up to that choice actually is. 

Mistakes

Tamar: Ok. While it’s helpful to think about and prepare for these conversations, we all know the truth is that they don’t always go as planned. So we want to spend some time talking about common things that trip us all up when discussing code status. One thing that can feel like a big missed opportunity is not bringing up the quote-unquote “I’m worried” conversation early enough. As we’ve mentioned before, reflecting on these decisions can be a long process for patients as they begin to think about their mortality. Putting off starting this discussion earlier can make later decisions much more difficult.

Dr. Jacobsen: I think you can make that mistake, um, with your primary care patients in clinic. And I think you can make that mistake in the hospital setting as well. I think it’s sometimes, there’s a lot of to-dos every day and there’s a lot of tasks and these conversations can feel heavy. They can feel sad sometimes, and it can just sometimes never feel like the right day to sit down and talk about your worries with a patient. And so I think that’s, it’s easy for all of us to postpone them. And then sometimes, you know, what happens in the hospital setting? We were worried when they came in, we were worried day one and day two, but then we got distracted with all the tests and the diagnosis, and then at day 10, someone’s dying. Right. And we haven’t even had the first conversation. So how are we going to have an informed consent conversation when we haven’t even said that we were worried? 

And so I think the more we can take a little bit of time to, to be able to start talking about this with our patients, the more prepared they’ll be, because it’s hard to make the decision all at once. Even if it’s, the information is communicated beautifully, it’s hard for patients to take in the information and to adapt and then to make decisions based on it. And so the more points of contact we have where we can, just space out the decision-making a little bit and space out the prognostic disclosure so people have time to take them in. I think the more successful patients will be in being able to make decisions that are consistent with, with what they would’ve wanted, if they’d had that time.

Margot: Since patients need time to adapt to new information, it’s important not to go into the conversation intent on getting a DNR.

Dr. Cooper: So I think one approach that I try to avoid is feeling like a decision has to be made immediately. And there’s this sense of, like, we just have to make a decision right now and sometimes families or patients just aren’t ready for that. And I think we have to acknowledge that and just be okay with the pace that the patient and the families want to go. And there’s a grief component to this as well. There’s always grief when you’re talking about – there’s realtime grief – when you’re talking about, um, uh, the possibility of a loved one dying.

So I think acknowledging that and being okay with not making a decision at a first meeting and just saying like, this was really, this is a status update and acknowledging that that was still something we achieved something. And, um, and then following up and saying, you know, it sounds like you as a family, really need some time to kind of process what’s happening. And we need to see how the next hours and days evolve. Um, I’d like to set up another meeting so we can talk about it again. 

Margot: Another potential pitfall is accepting a DNR status without making sure the patient understands what that means. Quite often, when patients tell me they want to be DNR, what they really mean is that they would want a trial of CPR, but wouldn’t want to live on machines indefinitely.

Dr. Jacobsen: I’ve heard of cases where healthy patients where maybe made DNR/DNI, because they didn’t really understand the question and died, you know? And so we want to be as careful with healthy patients to recommend CPR as we are with our sicker patients, to have more nuanced conversations about the benefits and burdens. 

I think we, um, sometimes are too sensitive when young patients say I wouldn’t want that, and we really need to explore kind of what that is, what that means to them. You know, many patients don’t want to be prolonged in a vegetative state, but they don’t understand what we’re talking about are helpful treatments that could help them get through an episode. And so we have to be very clear

You know, sometimes even just asking the follow-up question, you know, if this were reversible and we thought we could get you better and off the machine in five days, would you want that? And then many patients are like, Oh yeah, that I want that. Um, so it’s just a matter of kind of probably not going far enough.

Margot: So if you’re coming onto the care team of a patient with an unexpected DNR order in place, here’s a way you can revisit their code status.

Dr. Jacobsen: So you’re, you’re on the floor and this patient comes up. Who’s like, let’s make her 25 with new leukemia and is the DNR because someone else had a conversation and she’s terrified and she’s just got this diagnosis. I would pull up a chair for that conversation. Um, and I would say something like:  I’ve just been going through your records and I noticed you had a conversation earlier, um, this, this hospitalization or earlier today about CPR and resuscitation. And I wanted to talk a little bit more about that and, and, and, you know, you’re just looking to see if they even remember that conversation, right? Cause you could imagine this, this patient’s had a hard day.

And so then I would just use, tell me more, which is a really good way to express curiosity. Um, can you tell me more about that conversation and what you understood? Right. And then you’re gonna get some kind of answer like, well, I don’t want to be kept alive on machines. And so what I usually do when I’m talking with people is I repeat back what they tell me so that I know that I’ve got it right. And also so that they know I’m hearing them because, because I know I’m going to challenge it a little bit. So I first want them to know that that I heard, right? 

So I might say something like, I hear that, that you don’t want to be kept alive on machines. Um, can you tell me a little bit more about that? Because I want to know what she’s afraid of, right? Like, did she have a grandmother who was on a machine for a year in a nursing home and that was terrible or is she just like, I don’t want to be a vegetable. Um, so, so it’s a really deep exploration of what that decision means and what somebody understood kind of once, you know, why they’re making that decision, then you can better address your own concerns. And so that might look something like, you know, I hear that you don’t want to be kept alive on machines. I hear your grandmother really suffered, um, when she was on a ventilator for, for a year, um, that you’d never want that. What I’m seeing medically is if there was an emergency, a machine might help you to get through it. And what I’m worried about is that if we don’t try, we may miss the opportunity to get you better. Cause I think there’s a good shot at getting you better.

Tamar: And whether this is a first discussion or we’re clarifying a code status, it’s also really important to think about the language we use. 

Dr. Riches: I try to avoid what I would consider ambiguous language. Um, I’ve heard, I heard phrases, like we can do chest compressions, et cetera, et cetera, or we could allow you to pass naturally. And as much as I have an understanding of what someone means when they, if they pass naturally in that context, I would say, certainly not all people do, and that’s not clear enough for me. It’s not clear enough language for me. 

I very much avoid using numerical prognostic values. Um, I heard, I heard a clinician say in the middle of a conversation of this sort, well, he’s got six weeks to live. I can’t speak for anybody else, but I, I, I have no ability to ever know that to, to that level of accuracy. So I do go back to sometimes the worry statements since then, I worry that life expectancy could be days to week.

Dr. Ellenberg: I try not ever to use the word “need.” I try not to say something like, so if we got to the point where you“needed” a breathing machine, where you “needed” chest compressions, would you want them because I don’t want a patient or a family member to think about this as something that they do or don’t need. I think it’s something that they might or might not want to try, but couching it in that way almost primes them to say, “well, if I need it, of course I want it”. So I tried not to think about it in terms of something that they need, but in terms of something that might be appropriate. When I learned that one, that was really a turning point in how conversations went.

Dr. Riches: Another word that I have trouble with is like the word aggressive or heroic. You know, again, they’re so sort of ambiguous and subjective. Um, and I think that so aggressive speech, yes. I want to be aggressively taken care of if I sick, whatever that means. Um, and I think there are times when an aggressive measure is appropriate even in the end of life. Um, and I think of situations where somebody might have weeks to live, most likely, but there is an acute bleed and we can control that bleeding with local measures. You know that for, for that patient might mean seeing their children or grandchildren or spouse, or, you know, any loved one once or twice before they, before they die. Um, it might mean getting some affairs in order. There’s so many things that we can’t imagine. Um, and I think, I think that even during the process of dying, there are opportunities to be more medically aggressive in treating unforeseen acute issues.

Margot: Finally, it’s important to document a bit of the nuance of the conversation you have with the patient. When I cross-cover overnight, I rely on goals-of-care conversations that have happened during the day. I revisit those conversations if a patient decompensates, but if the only thing in the chart is “DNR/DNI” without any more information, I pretty much start from scratch. Does the patient understand what DNR means, or was there a misunderstanding and they actually want a trial of resuscitative measures? Are they transitioning to comfort care, or would they want everything short of CPR and intubation?

Dr. Jacobsen: In addition to the medical decision that we document that someone’s DNR DNI, probably the values that inform those decisions are probably the next most important thing to, to put in the note, right? So, patient understands their prognosis is short, possibly on the order of months, it’s most important to have as much time as possible. Patient also wants to make sure their death is peaceful. Ideally at home is worried about his family. At this time, um, the plan is for a full code, but the patient wouldn’t want to have his life prolonged unnecessarily. If we didn’t think that we could make them better, um, with, with ICU level care. 

So something that is like more of a conversation than simply the medical order, because your patient, um, if they are coded and they are in the ICU, the decision-making doesn’t stop. Right? It’s, it’s, it’s just that it shifts to the family. And so any other nuance about what was important to that person is going to help unburden that family as they try and figure out what to do and what that person might have wanted. 

Wrap-up

Margot: We’ve gone over a lot today, and I want to wrap up by thanking Dr Jacobsen, Dr Cooper, Dr Ellenberg, and Dr Riches for helping us navigate these complicated conversations. 

Dr. Jacobsen: This is one of the hardest things that we do, these conversations it’s, it’s kind of, it’s complex medical decision-making, it requires recommendations. It requires prognosis. It requires clinicians to manage uncertainty. There’s high emotion. When you think of, of the communication skills involved, it’s really high level. And yet we begin them when we’re interns, in the middle of the night, and that’s a very difficult place to have one of the hardest conversations there is to have. Right? And so part of the three-part structure is helping you figure out how not to have that very complicated conversation when you don’t need to, and then preparing for it in the right way when you do, making sure you have the right people in the room, and the right information to begin that conversation.

Margot: These conversations aren’t just about CPR and intubation – they’re about values and goals, about the conflicts between hope and reality, about the possibilities of medicine and the inevitable limitations of mortality and death. We hope this episode will help you next time you walk into a patient’s room to find out what matters to them, and whether resuscitation can help them get there.

Jafar: Thanks for tuning in!  We know these topics can stir up more questions than answers, and we look forward to hearing more about your experiences with code status discussion. Please continue the conversation with us online at our facebook page, on twitter, or email us directly.   Find show notes and contact information for us on our website:  coreimpodcast.com

If you enjoyed listening to our show, and you’d like to provide a direct clinical recommendation to other listeners, please give us a review on itunes or whichever podcast app you use; it helps other people find us.  We work really hard on these podcasts so we’d love to hear from you.  Let us know what we are doing right and how we can improve.   And as always opinions expressed in this podcast are our own and do not represent the opinions of any affiliated institutions. 

Finally, special thanks to all our collaborators on this episode, our wonderful audio editor Daksh Bhatia, our illustrator Michael Shen, endless technical support from Harit Shah, moral and executive support from Shreya Trivedi, and most importantly thanks to you, our listeners!

References

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