Dying after leaving against medical advice [PODCAST]

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“This is where we are: Hospitalizations rising, new variants that are more infectious, and many people believing that this is all a hoax, or that millions of people have conspired together to make injections that harm people rather than helping them. Patients leaving AMA and dying because there’s no trust anymore.

This is where we should be: People recognizing that we don’t like wearing masks or getting shots but maybe we should in order to get things under control, people trusting that health care workers are really working toward the best interest of everyone, health care workers optimistic because they see progress.

How do we get from here to there?”

Steve Burgess is a hospitalist and creator, Hospital Medicine Seminars, where he teaches CME focused on updates for those who practice hospital medicine.

He shares his story and discusses his KevinMD article, “Dying after leaving AMA.”

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Hosted by Kevin Pho, MD, The Podcast by KevinMD shares the stories of the many who intersect with our health care system but are rarely heard from.

Transcript

Kevin Pho: Hi, and welcome to the show, where we share the stories of the many who intersect with our health care system but are rarely heard from. My name is Kevin Pho, founder and editor of KevinMD. Today on the show, we have Steve Burgess. He’s a hospitalist, and he wrote the KevinMD article “Dying after leaving AMA.” Steve, welcome to the show.

Steve Burgess: Well, thank you very much. It’s good to be here, Kevin.

Kevin Pho: We’ll get into the article a little bit, but first off, can you share your story and journey to where you are today?

Steve Burgess: Sure. I’m a hospitalist. For a number of years, I actually did primary care and hospital medicine work, and over those years, I learned I enjoyed the hospital environment more. And so a few years ago, I made the transition to only doing inpatient work. I only deal with adults, not with pediatric patients.

And that situation sure has changed a lot in the last year and a half, since COVID has come around, and we’ve seen ebbs and flows. Generally speaking, I enjoy it. I really like what I do. I think it’s one of the greatest jobs in the world, but at times it has incredible, unbelievable challenges, especially lately.

Kevin Pho: Now, that division between primary care and hospital, this certainly has been a trend over the last decade or so. I’m in internal medicine myself, and I remember when I was starting out, I would have to round at the hospital in the morning and then do primary care in the afternoon. Now I’m a little bit the opposite of you. I’m strictly a primary care physician. So tell me the evolution of the hospital. Tell me some of the challenges that you’re facing every day, being in a hospital and seeing hospitalized patients every day.

Steve Burgess: Well, I’ll tell you, one of the biggest challenges is that for the majority of our patients, it’s the first time we’ve met them. They’re in the hospital, they just met an ER physician that they may or may not have ever met before, and the decision is made they need to be admitted. Then we come in, and they’re sick. They may be on the verge of death. They may just be having a COPD exacerbation or something like that. They’re scared, and it’s very hard to build trust or earn trust from a lot of these patients when you’ve never met them before.

That’s one of the things: Doing primary care work over a period of years, you get to know these patients, and a lot of times you have a lot of trust with them. Probably half my patients, I took care of more than one family member. And so over time, they know and believe that when you say something, they take it to heart.

Being a hospitalist is a lot more challenging when a patient comes in and they’re on their third different kind of chemotherapy for metastatic renal cell cancer, and they’re sick, they’re septic, and you have to have a conversation with them about code status. And it’s like, “Oh my gosh.” They’ve never even had this thought enter their mind, that their heart may stop beating at some point in time, even though they’re on their third different kind of chemotherapy because the first two didn’t work. It’s very challenging to build trust in scenarios like that, but that just comes with the territory.

Kevin Pho: What are some of the things that you do to build up trust in such a short amount of time?

Steve Burgess: The first thing I do is, and my biggest pet peeve in the hospital is when the stool is not in the room, I like to sit down and actually talk to the patients. Before I go in there, I try to read a little bit about them in their chart, try to understand, get a feel for what’s happened over the last few years, especially if it’s something like they have metastatic cancer or something like that. I try to get a feel for what it is that brought them there and is going on that day, and what I think the trajectory looks like, so I know if I need to have a serious conversation with them.

If they’re in there with a COPD exacerbation, and it’s the third time in the last couple of years that this has happened, you have every expectation they’re going to be going home in a few days. That’s one thing. But I always try to ask myself, “Would I be surprised if I end up having to sign a death certificate on this patient sometime soon?” And if the answer is no, I wouldn’t be surprised at all, then I don’t want to paint a picture like they’re going to die, but I want to make sure that they understand that that’s a legitimate possibility. None of us is going to live forever.

So I try to sit down and talk to them and get a feel for what is going on with them and how they understand their disease process, or don’t understand their disease process. And that’s very challenging when you just met the patient for the first time.

Kevin Pho: So that theme of trust is very prevalent in your KevinMD article that you wrote. It’s titled “Dying after leaving AMA.” For those who aren’t familiar with that acronym, AMA means against medical advice. Now, for those who didn’t get a chance to read your article, can you just walk my audience through it and share the story of why you decided to write it?

Steve Burgess: So I wrote this, this was one of those days. I don’t know, it was probably, I had a 17-day-in-a-row stretch, and this was about halfway through. We’ve been very busy. The hospital’s been very full, and a nurse called me early afternoon from the COVID floor. I probably had five patients at that time that were on the COVID floor, and it’s very challenging. These patients now tend to stay there for two weeks, three weeks. Usually, if they’re being admitted, they’re very sick, and they’re not getting out of the hospital anytime soon.

And the nurse called me and said, “Well, your patient wants to leave AMA.” I went and talked to the nurse very briefly and said, “What’s going on?” And she said, “Well, he says what we’re doing isn’t working.” So I went and saw the patient and sat down. It’s really easy to be confrontational. I did not want to be confrontational. That’s not going to help in any way, shape, or form. So I sat down, and I said, “The nurse said you’re interested in leaving the hospital.” And he said, “Yeah.” I said, “Well, help me understand what’s your plan, because you’re requiring an awful lot of oxygen.” He said, “Well, I’m going to call my doctor.” “Oh, OK, who’s your doctor?” He told me who his doctor was, and I said, “OK, I’ll give him a call.”

I said, “Well, why don’t we try this first?” Because he was on high-flow oxygen, not a regular nasal cannula, but the big one, 60 liters of oxygen per minute on an FiO2 of 100, pure oxygen, and that’s what he was requiring. I mean, that’s about as high as we can go without a patient being on a ventilator. And so I said, “Well, if you’re going to go home without oxygen, let’s see how you do without oxygen.”

So we took off his oxygen and had him just walk around the room. The room’s only about 12 by 12 feet; I’m sure it’s like a cell after he’d been there for 10 days. We had him walk around the room, and next thing you know, his oxygen saturations are down to 60. By the time they got to 80, the nurse was getting anxious. She wanted to put the oxygen back on. I said, “No, no, no, let it go a little longer.” So it’s 60, which took maybe 60 seconds, probably 45 seconds. We put the oxygen back on him, and I said, “You really need that oxygen. Your level fell to 60 in less than a minute.” He didn’t seem to think that was important at all.

So I went and called his physician, and he called the patient on his cell phone. Ten minutes later, he calls me back and says, “I didn’t meet with any success whatsoever.” The patient wants to leave. So I went back in and talked to the patient again, and I said, “Tell me, what would you want?” This patient was relatively healthy. He was 66 years old. He was only on blood pressure, two blood pressure medications. It’s not like he had a whole bevy of chronic conditions; he really didn’t. And I said, “What would you want if your heart was to stop beating?” He indicated he would not want CPR, and he would not want to be put on a ventilator, so he actually executed a DNR form.

His wife was not happy about this, and we just explained to her, “This is not North Korea. You have the right to leave the hospital as long as you’re not a danger to someone else. We can’t just keep people here. It’s not prison.” She didn’t like that, but she understood it. I didn’t really like it either, but not that I wanted to keep him there. But regardless, he signed the paperwork, left AMA, and went down in the elevators on five liters of oxygen. The nurses took that off when he got in his wife’s vehicle, and unfortunately, the next morning, when he was nonresponsive, she called 911, and he died in our emergency room the next morning.

Kevin Pho: So as you reflect on this story, what was going through your mind when you heard that he went back to the emergency room and passed away?

Steve Burgess: A lot of sorrow. None of us went to med school to see patients die unnecessarily. A lot of people make dumb decisions, including me. We all make dumb decisions from time to time, and this patient didn’t need to die. He shouldn’t have died. He might have died from COVID a week later; I don’t know the answer to that question. But after 10 days, he was pretty stable in the hospital. I anticipated that over the next probably 10 days, his oxygen requirements were going to come down and he was going to get discharged home. I could have been wrong, but that’s what I sort of expected the trajectory to be, and I explained that to him. But it was very sad that this patient died. I didn’t feel that that was necessary.

And then I also felt very, I don’t know the word for it. It was just puzzling as to how we got to this point. How did we get to the point that someone who’s calm and collected, he wasn’t confused, he didn’t have altered mental status, just has this belief that everything that the nurses and respiratory therapists and doctors are telling him is just flat out wrong? I think he really believed that he was going to go home and be fine, and I just scratch my head and wonder, how did we get to this point where smart patients think we’re just making this stuff up? I just don’t get it.

It’s puzzling, and it’s disappointing, and it doesn’t make me question whether or not I want to be in medicine, but it makes me question how did we get to this point, and how do we get out of it? That’s the real question for me, and I wish I knew the answers, but I don’t pretend to.

I just know that when people truly believe that they don’t need treatments for COVID, or that they’re better off getting not even experimental medicines, anti-parasitic drugs. I just admitted a guy to the hospital yesterday who was driving halfway across the country to get experimental ivermectin prescribed by some physician. He ended up in our emergency room here, and now he’s on a ventilator because he waited for three weeks to see a doctor about his COVID symptoms. How did we get here? It just boggles the mind, and I wish I knew how to regain that trust.

I’m not saying that patients should just blindly trust what a physician told them, like they did 50 or 60 years ago. I think it’s perfectly fine for us to try to have shared decision-making and informed consent with patients, but we need to get back to where patients ask us a question and they believe what a physician or a nurse is telling them more than some post on Facebook from someone who has no medical training whatsoever. And yet so often, they’re trusting that post on Facebook more than they’re trusting what we’re telling them. I wish I knew what the answer was. I honestly don’t.

Kevin Pho: How often does this happen, where a patient leaves against medical advice and unfortunately ends up dying? Is this a common occurrence over your years as a hospitalist?

Steve Burgess: Not like this. Patients leave against medical advice. I personally don’t think I have too many patients that leave against medical advice. That may be biased by the fact that I did primary care and hospital work for so long, so my inpatient patients were the ones I pretty much already knew, rather than patients that just don’t have a primary care provider or whatever and end up on a hospital service.

Most of the patients who leave against medical advice, they’re usually not that sick, and honestly, it’s usually because of some other issues that are going on. Like, they’re addicted to cigarettes or alcohol, and they really don’t believe that their illness in the hospital, and usually it isn’t life and death, is that severe, and they want their next cigarette or alcoholic beverage or hit of amphetamines or whatever the case may be, and they leave against medical advice. Most of the ones who leave against medical advice are younger, relatively healthy, and they’re leaving for those kinds of reasons.

And honestly, yes, they sign a form that says that they could die, but the truth of the matter is the odds that they’re going to die because they left the hospital are very low. They may end up dying, but it’s because they end up dying sometime within the next six months or a year because of other issues that are going on, like cirrhosis. But it’s not like this, where the patient was in the hospital for a particular medical issue, they left AMA, and they died the next day from that same medical issue. This is the first time I’ve had that happen that I’m aware of.

Kevin Pho: During those 10 to 14 days while you were taking care of this patient, was he mostly compliant with your treatment? Did he openly question what you and the nurses were doing while he was in the hospital?

Steve Burgess: So on the COVID floor, it seems like the hardest thing to do is to get patients to lie on their belly, to get them to prone, even though that’s one of the absolute best treatments that we can do. But he didn’t fight any of the other treatments. At this point in time, we give him remdesivir, we give him steroids. He was basically done with those treatments, and it’s just a matter of time and proning.

I wish we had much better treatments for COVID, and there’s a lot of stuff in testing and in development, but the truth of the matter is we don’t. We don’t have a lot of great treatments for many viruses, and in this particular situation, he was pretty much done with the medications that we could give him. It was just a matter of time and waiting, and I’m not a good patient when it comes to that.

He said, “Well, what you’re doing isn’t working,” and I’m not going to lie to you, yeah, there’s a lot of truth to that statement. I think that what he needed more than anything else at that point in time was time, and that’s something he wasn’t willing to part with.

Kevin Pho: We’re talking with Steve Burgess. He’s a hospitalist, and he wrote the KevinMD article “Dying after leaving AMA.” Steve, I think what you said earlier about that lack of trust, where some patients are getting their information from Facebook, and there’s a devaluation of expertise, and you put that in the context of COVID being politicized, I think that’s going to lead to more and more scenarios like the one that you described. Do you think there’s anything that you could have done differently to build that trust? And just taking a step back, what do you think are some of the ways that physicians and other medical professionals can regain that trust with patients so incidents like these don’t happen very often?

Steve Burgess: In this particular scenario, I’ve thought about this a lot, and I don’t think that there’s really anything that we could have or should have done differently. I really don’t. This sort of came out of the blue. I didn’t expect this call about this patient wanting to leave at that point in time. I don’t know if there’s anything we could have done differently in this particular situation. I honestly don’t. Did we do a terrible job at explaining that this is probably going to take a long time, and so his expectations were different than what our expectations were? Yeah, maybe so. Maybe we could have done a better job at helping him understand how long we thought this process was going to take.

Moving forward, I think that it’s very important for physicians to have empathy with patients. I’m sure this wasn’t an easy decision for that patient either. And to not be judgmental. It’s very easy, especially in the way all of these politicized issues have become very heated. It’s just amazing how people get so entrenched in certain positions, to the point where anyone who has a slightly different view from you is like your enemy, and that is not something we need in medicine. That will erode trust even faster than it’s already been eroded.

That’s very challenging when everything is now geared towards doing things faster, you understand, in an office setting and also in a hospital setting. We now have to see patients and generate notes pretty quickly. We don’t have a ton of time with our patients; that’s just the way that the system is, and it’s very challenging to build trust in a time-constrained environment like that. When we’re rounding at the hospital, a lot of times we’re seeing 17, 18 patients a day, and that may not sound like a lot to someone who practices urgent care, but that’s a lot when someone’s very sick and in the hospital and demanding a lot of attention, and a lot of tests are coming back, and you have to consult with physicians, and a lot of different issues like that.

Kevin Pho: And my final question, what’s your take-home message that you want to leave with the KevinMD audience?

Steve Burgess: In a lot of cases, I think it behooves us to try to put ourselves in the patient’s shoes and try to understand what is going on with this patient, and try to empathize and not be judgmental, especially when patients are doing things that are just not very intelligent. A lot of times, they’re doing that for good reasons, and try to understand those reasons. In this particular situation, I tried, but I wasn’t able to get through to the patient. Maybe there’s a lesson there we can all learn from, and hopefully move forward and build trust with patients, rather than having it eroded by so many of the issues that are going on in the political nature of so many things in medicine today.

Kevin Pho: Steve, thank you so much for sharing your story, time, and insight, and thanks again for being on the show.

Steve Burgess: Thanks. Have a good day.

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