What does “code status” really mean — and how does it affect the care we receive at the end of life? In this episode, Dr. Matthew Tyler returns to clarify common misunderstandings about CPR, DNR, and medical interventions during serious illness and the frailty of old age. We explore when full code makes sense, when it probably doesn’t, and how patients and families can make informed, values-based decisions. We also discuss Dr. Tyler’s new caregiver coaching services, through which he offers personalized support when palliative care isn’t available locally. I think everyone should explore these issues and have someone like Dr Tyler on their team to talk things through!

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Transcript:

Diane Hullet: Hi, I am Diane Hullet and you’re listening to the Best Life Best Death podcast. I’m here again this week with Dr. Matthew Tyler. Hi Matt. 

Dr Matthew Tyler: Hello. Good to be back. 

Diane Hullet: I. I’m excited. We have spoken on Best Life, best Death number 1 28 and 1 64. And we like to, uh, see each other on Instagram, which is where we’re both pretty active as well as other social media.

And uh, last week we were talking about pain at the end of life, which I think is a really interesting topic. And this week we wanna talk about. Codes and I was, as we were kicking around these topics, I was thinking, you know, as a non-medical person, I don’t even know if I know what that means. When you say codes is a really interesting topic, I go, great, let’s talk about it.

But what does codes mean? What does it mean to code at the end of life and how can we help listeners understand that in the context of hospitals, medical system, death and dying, what do we need to know? 

Dr Matthew Tyler: Great. Um, I. For those, uh, whom, uh, I haven’t met before. Uh, I’m Dr. Matthew Tyler. I’m a hospice and palliative medicine physician, and, uh, most of my work, uh, I’m, I’m working in a hospital as a palliative care consultant, um, which means I get brought in for any sort of difficult medical decision making.

Um, helping the medical team and helping you as the patient or caregiver understand your options and picking the one that makes the most sense for you. Uh, and, uh, as, as you mentioned, Diane, I’m very active on Instagram, under the handle, uh, how to train your doctor. And I, I will tell you that, uh, the, of all the videos I make regarding palliative care topics, the ones related to code status and and CPR tend to get a lot of engagement and a lot of very strong opinions.

Uh. So, uh, to answer your question, what’s, what are codes, what’s code status? Um, this, this all refers to how we intervene, uh, on a patient who is about to lose their pulse and about to have their heart stop or, or those who is hard has, has stopped and they’re medically speaking dead. And how we intervene on that is, you know, laid out in the patient’s code status.

If this person’s showing that they can’t breathe on their own, are we gonna put a tube down their throat and, uh, attach ’em to a ventilator that will breathe for them? Uh, if your heart has stopped, are we going to initiate chest compressions and CPR in an attempt to, you know, get your heart, uh, beating again?

And the, the interesting thing about code status is that there’s a default setting and, and that default setting is what we call full code. Meaning, uh, if you are about to die or you have medically speaking, just died by losing your pulse. Uh, the default is we do everything. We, we, uh, put you on a, on a breathing machine.

We do chest compressions and CPR to try to restart your heart whether or not that medically makes sense for you and, and whether or not that would really be according to your wishes. I will, so I’ll pause there ’cause we can go in a lot of different directions from there. But that is gonna code status in a, in a nutshell.

Diane Hullet: So, so is code status. So, so I come in as an emergency room patient from a car accident and I’m given a code, or I choose the code. 

Dr Matthew Tyler: So if you’re coming in, in a, in an emergency setting, uh, you know, this kind of gets back to what the default setting is, which is we’re as physicians, nurses, healthcare professionals, we are going to do everything possible to try to save your life.

Um, and that’s because in an emergency, we often don’t have time for a conversation. If you’re coming in, you know, uh, acutely ill, critically ill. Often you can’t even tell us what to do because you’re unconscious. And, uh, the, the general default setting in healthcare is to do everything first and then ask questions later.

Um, because most of the time that makes sense. Um, if someone is, you know, like Derek Hamlin, uh, the NFL player, uh, I believe it was last year, 23 or 24, um, anyways, sudden cardiac arrest on the field, his heart to suddenly stop beating. Uh, no one was, you know, pausing to have a conversation about his wishes.

It was, it went without saying that. He, you know, he would wish for us to intervene and restart his heart as we did. And, you know, he’s, he’s, he’s back at it now. Um. 

Diane Hullet: And I would say, right, I’m in my fifties and I’m in a car accident, full code. I mean, do everything you can. I’m in my fifties, right. I feel light a lot of life left to live, but 

Dr Matthew Tyler: Right.

Diane Hullet: Okay. Now I’m 85 and I’m in poor health and I’ve been chronically frail. I’m for those who’ve never met me, I’m not very big. I’m five feet tall. I’m a tiny person. So I’ve gotten frail and I’m 85 and I go into the er. Now, am I full code unless I tell you otherwise? 

Dr Matthew Tyler: Uh, that’s, that is correct. Uh, and, and so for those not familiar with the lingo, the, the flip side of the coin to a full code, uh, is a DNR or do not resuscitate.

Uh, and as we talk about, do not resuscitate, we’re getting at this notion of setting limits at how far, how aggressive the medical team will go to try to prevent you from dying. How far it makes sense to go, largely as you’re getting at, depends on, you know, what, what is your health, you know, what is your baseline health right now?

Uh, are you otherwise healthy? Uh, or have you been getting progressively weaker and more frail from a chronic illness like dementia or, or cancer, uh, for some years now. And the heart stopping is really kind of the last thing to go, rather than the first thing to go as it was for, you know, uh, professional athletes who kind of, uh, drop over on, on the field with the court.

Diane Hullet: So is there, is there such thing as half code? Is there like, like is the only code, full code or do not resuscitate or like, I’m trying to understand is there a, a continuum here or is does code just mean full code, do everything we can to intervene or, I’ve signed ahead of time, a do not resuscitate, do not intubate kind of thing.

Dr Matthew Tyler: So this is an interesting question that can somewhat vary based on the facility that you’re in, what hospital that you’re in, or if you’re in a nursing home setting. Um, there are kind of gradations of how aggressively we intervene. Um. And in in particular, we sort of parse this by has your heart stopped?

Like are you medically dead right now? And we’re talking about whether or not to initiate chest compressions with CPR. Um, when we talk about a do not resuscitate or a DNR at baseline, that means if your heart is stopped and you are medically speaking dead, we are not going to intervene at that point. Uh, there are, there are slight upstream decisions, uh, that kind of get bundled into what we call code status.

Uh, which are the things that we would do if you are about to lose your pulse and die. Um, the, the big one that always comes up in conversation is if you are gonna losing, losing your ability to breathe for yourself. And obviously if you’re not breathing and don’t have oxygen, your heart will stop. The question is, would we intervene with a breathing tube and a ventilator to breathe for you with a machine in order to try to prevent your heart from stopping in, in that case?

Uh, and there are a few other decisions kinda related to, would, would, are you a person who would be open to going to an intensive care unit for other forms of life? Support things to keep your blood pressure up if it’s becoming too low to keep blood going to your vital organs. You know, things that will, if not addressed, lead fairly quickly to your heart stopping too.

Diane Hullet: Wow. And the, and I think the reason this is so key and important to understand is because of. You know, to me it’s less about the sudden accident, the fall off the ladder, the, the cutting. Something that, you know, causes a huge problem. Those, to me, just, this is my bias speaking, but like those, to me it’s like typically, yeah, you wanna, you wanna bring the person back.

They’re typically, um, otherwise fully healthy and there’s been an accident and we wanna try to. Stop that, right? Mm-hmm. But then there’s this end of disease progression and end of life progression. And whether that’s frailty in your seventies or frailties at 102, there is this frailty that comes. And so those seem to be, to be the critical place.

Where have you thought about what interventions you want and have you conveyed that to the people who. Are around you who might be caring for you and or your medical team, right? Because this is where it’s tricky. Most people would say, I do not wanna be intubated in my eighties and die in the ICU. And yet, I think what we see is a number of people in a fairly frail state do have these interventions of CPR intubation, and I think maybe what they’re hoping for is to be back where they were.

When the incident happened that caused ’em to end up in the hospital, or they’re hoping to be back where they were three years ago. ’cause they’ve had some trouble in the last three years. But for many, many people, they do not come out of those situations in the same state of health 

Dr Matthew Tyler: I. Yes. Right. No. Right.

Right. Yeah, it, uh, a very, a helpful framework for thinking about the benefits of CPR R that I heard. I didn’t come up with this, but, um, I, I heard someone say that CPR was designed for people for whom the heart is the first thing to go, not the last thing to go. Uh, and that kinda gets to your point about the heart stopping at as, as the culmination of a chronic progressive illness like, like cancer or, or dementia, that this is someone with a body who’s been, you know, getting sicker and frailer over months to years.

Uh, whom really the heart stopping is sort of the, the end, the end game of that, not just someone who was otherwise healthy and just their heart stopped out of the blue because of some genetic or congenital abnormality that we just didn’t know about until it presented as the heart stopping. The nuance to that, and this gets to the other part of, of what you laid out there, is that if you haven’t had a conversation with your medical team about your illness, if, if someone hasn’t sat down with you and said, Hey, like, I wanna make sure you understand how this illness plays out.

Do you understand the trajectory of your illness? You’ll understand that this is not just chronic, but also progressive. Do you know what that means? You, you may have a misunderstanding about the potential benefits of, of A CPR attempt. Um, and I I say attempt ’cause there’s no guarantees there. And the statistics would say that most people for whom we attempt CPR do not survive that attempt.

They die anyways. Um, and that’s all commerce. And when you parse out just the folks with chronic progressive illness, the stats are even worse. Um, and, and the art there is really talking about CPR in the context of, of the trade off that comes with the attempt. 

Diane Hullet: Say more about the trade off. 

Dr Matthew Tyler: Yeah. Well, I will, uh, I’ll, I’ll tell you about a patient I took care of years ago that really, um, uh, kind of, uh, gets at what you’re talking about.

Um, and this notion of. Yeah. What’s, what’s the harm in trying CPR? Right? If I’m gonna die anyways, why not try? So this was, I was, I was a trainee at this point, and I was, I was admitting, uh, to the hospital, a patient with very advanced stage four cancer metastatic throughout his body. Uh, was just skin and bones, very, very frail, coming in with an infection and been admitted multiple times over already.

And as we are taught to do, when you admit someone to the hospital, you ask about their code status. Meaning if your heart stops while you’re here, do you want us to attempt CPR? And I asked that question to this patient. He said, well, sure, yeah, go ahead and go ahead and attempt CPR. Uh, and I’m just immediately like, my, my heart rate jumps like 20, 20 beats a minute.

I’m like, oh, no. Like if we, if we try to code this guy. It’s a, it’s not gonna work. We’re gonna break his ribs. It’s gonna be a, it’s gonna be just a, a disaster. Um, and so I told him, you know, look, I gotta be honest with you, if we, we attempt CPR on you with this like a, a 1% chance it’s gonna work. And he looked, just looks at me and he says, well, sure, but if you don’t attempt CPR, there’s a 0% chance it works.

And. It really just like stunned me. I didn’t, I didn’t have, uh, I didn’t have a response to that at, at the time. Uh, because he was right. I mean, he was right. Statistically, you know, not attempting CPR is a greater chance of not, you know, of, of a worse chance of reviving you. ’cause we’re adopting CPR. Um, I think the problem is that’s how a lot of docs frame the question is, you know, do you want us to try something or try nothing?

And, and for people who don’t understand the complexities of that, of that decision, trying something always seems better than doing nothing, right? Because, you know, no one wants to really die. Um, but the problem is framing the trade off and, and the trade off that most doctors don’t present to you when they’re talking to you about code status is.

You’re trading off a very, very low chance of restarting your hearts, um, coming back to worse than you were. Um, and, and what you’re giving away is control over having a comfortable death. Um, because it’s, it’s not, it’s not just watching you die and not doing CPR, you know, uh, do not resuscitate means that as we see your body shutting down and as we see you dying.

We are going to intervene with the best medications to keep you comfortable, free of pain, free of shortness of breath, no, you know, as little anxiety as possible and, and support you through that to give you the best, most comfortable breath possible. Uh, and for folks with the chronic progressive illness for whom death is inevitable, um, and for whom their heart stopping is sort of the marker that they have succumbed to this illness.

As you, as you said earlier, most people would prefer to have. Comfort measures, uh, have a focus on comfort as, as they die naturally from their underlying illness. Um, but presenting that trade-off and having that conversation to make sure that they understand how their illness is going to play out, they understand the trajectory and understanding the trade-offs of these decisions is crucial.

And where, you know, frankly, as, as doctors, we don’t, we don’t get really standardized training at this, but some, some schools do it well, others. I don’t really get into this very much, and, uh, that can, that can be a real problem. 

Diane Hullet: It’s a huge subtlety. I really appreciate that. So much of the task of your work is the, is the talking, is the conversation, is the, how is it presented?

Because as you said, if the doctor says to me, well, do you want us to do everything for your mother? I. Well, of course, of course. I want you to, but Yeah. But that’s not really the right question on some level. And so that subtlety of how doctors and medical teams present what is presented to the general person who doesn’t know much about codes like me or what it means to be full code.

Yeah. This strikes me as a really, uh, important kind of topic and that people do have a lot of strong feelings about, and so is the. Antidote to this or is a piece of this, thinking through your advanced directive paperwork and signing that paperwork and having that shared with people that you love, does that keep you from being full code?

Dr Matthew Tyler: Well, and we’re talking about what are the things that are within your power to stack the deck in your favor, um, such that when you were in the last days of your life, if comfort is important to you, how do you make sure that. The people in your circle, whether that’s families, friends, or the medical team, how do you stack the deck so those folks are rallying to your wishes and you’re getting, uh, the most comfortable death possible.

Um, having a conversation is a big part of that. Um, talking to your friends and family and the folks who would ostensibly be called upon in an emergency, uh, by the medical team and making sure that they understand this general desire to have a comfortable death when, when that time comes naturally, uh, is is a very good starting point and a lot of folks.

Presume that everyone has the same wishes for end of life. We presume that everyone wants to focus on cover to end of life, and, and mostly true, but not a hundred percent true. So, uh, talking to your family about that, um, is important. Uh, naming someone to make decisions on your behalf. Um, if you’re too sick to tell the doctors what you want, uh, ideally through a healthcare power of attorney document, um, that’s, that’s important as well.

Um, and also. Really engaging your medical team in conversations about your health and trying to get a sense of, you know, from the time that you get diagnosed with, uh, a chronic illness like, like cancer, to make sure that you, to the extent that you want to know, um, you know, as much as possible about your illness and, and what to expect and what changes to look out for as markers, that things are evolving and it’s time to revisit our plans here.

Uh, that’s, that’s certainly a, a big piece as well. 

Diane Hullet: I can think of so many examples moving through my mind as you’re speaking. And two come to mind where there are two people that I know who were in the hospital in December of this year and they ended up being moved home. And I think the hospital message to both of them was kind of like, oh, this is really imminently the end.

And both of them, once they moved back to their home, surrounded by loved ones with hospice care. Lived for six to seven weeks, these two different individuals and you know, really incredible different experience than had they stayed in the hospital and said, I’m full code, that’s what I want. Mm-hmm. So they rallied when they got home.

Um, one was an older gentleman, one was a younger woman. But they rallied and found incredible strength and beauty and connection in those final weeks, which, you know, is hard to imagine that that death can be actually, as Stephen Jenkinson says, you know, a a, a good death is a village. Building event.

Mm-hmm. And so these were village building events where people came together and were closer because of this death. And that’s just so different than had either one of these played out to be staying in the hospital. They probably would’ve died in the ICU. So it’s a really interesting question. What, what happens when we face this directly and make some choices?

We actually have more choice is how I think of it. 

Dr Matthew Tyler: Yeah, I, I think it’s really worth highlighting the incredible work done on both sides of, of that story. Um, both the, the medical team stepping up to say, Hey, like, we’re worried your time is pretty short. Let’s talk about what we do here. And then the incredible work on the patient family side to lean into that conversation, be willing to hear it and, and build a plan around it.

To, to have that time. Um, 

Diane Hullet: and the incredible work of the hospice team, putting that in place. Yeah, lining that up, making it work, creating a schedule of family caregivers. I mean, it takes so much effort for families to move into this space. 

Dr Matthew Tyler: Yeah. I think that’s where the, the variability of, of training that physicians get to recognize.

Someone who is nearing the end of their lives, uh, before we’re in the last minutes to hours, um, the trending, to have a conversation about that in a way that helps you feel empowered and in a place to make difficult decisions. Uh, I mean it’s, uh, I mean, incredible work on their part. Um, and, you know, part of what I do in my work on social media is to show the, the power of getting a palliative care team involved.

For the folks who feel like maybe they’re not on the same page with their medical team, or they, they feel like something’s wrong and no one’s really talking about it, and they just, uh, kind of need a sounding board to make sure that they understand their illness and their choices. Um, that is where I encourage folks to ask for palliative care, demand palliative care, and, and, and get, get that extra layer of support to make the next step.

Diane Hullet: This seems like a perfect place to say that something Matthew has launched recently is caregiver coaching, and I think it’s really powerful to know that you can call Dr. Tyler and set up just a one-off conversation or kind of a series of conversations. And I would say to people, you know, these kinds of.

Things, having conversations with a person like myself, an educator or a person like Dr. Tyler, who can coach you as a caregiver. Yep. It costs some money. Yep. This is money upfront, but I can tell you that is money that the family will not regret spending because it will clarify decision making, clarify choice, and ultimately probably make the process more.

Um, I don’t know. You’ll feel better about it and when you feel better about it as a. Caregiver, you feel better about it as a griever. The people I see with complex grief, were not on the same page. Were not in, um, a good decision making capacity state themselves. And when the person dies, it’s a, it’s a shit show, right?

Excuse me, my language. But, and so there’s this, there’s this real capacity to go ahead and put some money towards consulting or conversation because. It is money well spent and in the fraction. It is a fraction of the money spent in these kind of healthcare situations, and it can make a real difference.

So you can find out about Dr. Tyler’s work at How To Train Your doctor.com. And in that you can connect to all your social media links, right? Mm-hmm. And also connect to this coaching service that you’ve, you’ve just launched recently. And I think it’s just tremendous because palliative care teams are not available everywhere.

And so, um, to have a skilled doctor that you can say, how should I work with my local medical team? What suggestions do you have and take those back to your team to implement, I think is huge. So, 

Dr Matthew Tyler: yeah. 

Diane Hullet: Oh my gosh. Thank you so much for two weeks of conversation. Last week we talked about pain management and all kinds of complexities about what is pain, what is suffering, what are the different kinds of pain, and how are they managed?

And today talking about codes, I think I understand it a little better, although I think it’s not really codes plural, it’s really just full code. 

Dr Matthew Tyler: Yeah, I would, I would say that the, the topic I couch under is, is code status. And you know, what, how we intervene, uh, as, as your body changes and whether that focuses on trying to keep your heart beating for as long as possible, or whether that is loosening our grip a little bit and recognizing when death is approaching and making a deliberate, uh, uh, shift towards focusing on your comfort while we allow natural death with, uh, the support that you need around that.

And that’s, uh. That takes, uh, that takes work, that takes work, it takes work on, on, on your end to, you know, have the, the strength to have that conversation and to voice your preferences. And it takes work on the medical team’s end to recognize that and, you know, walk, walk you through that too. Um, it’s, uh, and my, my hope is that you, you know, never, never need to hire me in particular.

Um, all, all my videos are out there for free with, with the hope that. You don’t need me. Uh, and my goal is that you find a palliative care team in your area to walk you through this. But certainly enough times now folks have have told me, Hey, I, we don’t have palliative care teams in our area. Like, what do I, what do I do now?

Um, I wanted to have something, uh, to offer those, those folks as well, because no one should have to make difficult decisions, um, by themselves. ’cause as, as you said, Diane, there could be a lot of. Second guessing, uh, regret that can complicate the grieving process, uh, more, more than it needs to be. ’cause it’s, it’s, it’s hard.

It’s hard losing someone no matter what. We don’t need to make things worse by wondering what if I had done things differently? 

Diane Hullet: Exactly. Exactly. Well, thanks so much for your time, Dr. Matthew Tyler, how to train your doctor, not your dragon, but your doctor. Um, as always, you can find out more about the work I do at Best Life.

Best death.com. Thanks so much for listening.