Your living will could get you too much care, or too little [PODCAST]

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When you can’t speak for yourself, a living will is supposed to speak for you. Too often, it doesn’t. Seventy percent of U.S. adults don’t have one, and those who do often keep it in a drawer at home. Emergency physician and MIDEO Health Technologies CEO Ferdinando Mirarchi and attorney Thaddeus Mason Pope discuss their KevinMD article “Why problems with advance directives keep harming patients.” You’ll learn that 80 percent of physicians equate the mere presence of an advance directive with a do not resuscitate (DNR) order. Mirarchi calls it the lethal glance, a split-second read by a clinician who has never met the patient. The errors go both ways: resuscitating people who never wanted it and failing to resuscitate people who chose full code. They explain how a POLST differs from an advance directive, how professional bias creeps in, and how patient-recorded videos can make your wishes clear in seconds. You’ll leave knowing what to set up for yourself and your family now, and why clinicians should stop and ask instead of assuming.

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Transcript

Kevin Pho: Hi, and welcome to the show. Subscribe at KevinMD.com/podcast. Today we welcome Ferdinando Mirarchi and Thaddeus Pope. Ferdinando is an emergency physician, and Thaddeus is an attorney. Their KevinMD article is “Why problems with advance directives keep harming patients.” Everyone, welcome to the show.

Thaddeus Mason Pope: Well, thank you. Thank you for having us.

Ferdinando Mirarchi: Thank you.

Kevin Pho: All right. I’m going to ask each of you to briefly share a story, and then we’ll jump right into your KevinMD article. Ferdinando, why don’t you go first?

Ferdinando Mirarchi: My story is not a pleasant one. I made a mistake quite a few years ago when I tried to take care of a fifty-five-year-old lady who was having a heart attack. I had a nurse confronting me, screaming at me, and flashing a piece of paper in front of me, saying, “She’s a DNR. Don’t shock her. Don’t shock her.” I froze. I was paralyzed. Fortunately, I had a cardiologist who was coming through the ICU. He saw what I wasn’t doing. He came over with the old-fashioned paddles, gelled them up, and shocked her chest. She started talking to us. We gave her a clot buster, streptokinase back then, and she went home.

Then, on the last night of my emergency medicine residency over at Allegheny General, I was taking care of a sixty-five-year-old guy who came in septic, had an advance directive, and was in rapid AFib, I think, at the time. I saw this living will, and I said, “Hell, I’m not going to make this mistake again.” So I resuscitated the crap out of him. I put lines in him, put him on a ventilator, and put him on pressors. His frail wife came in thirty minutes later and said he was an end-stage hospice patient, all he wanted to do was die, and she couldn’t take care of him at home.

I was pretty confounded at that point in time. I was confused. I was about to start my attending practice, and I had made a mistake on both ends. That’s what really propelled me into this work.

Kevin Pho: All right. We’re going to talk about that article in a little bit. Thaddeus, you’ve been on before. Just briefly reintroduce yourself, and then we’ll jump right into the article.

Thaddeus Mason Pope: I’m a law professor and bioethicist, and a lot of what I do is work to help assure value-congruent care: to make sure that patients get the treatment that they want and, more importantly for today’s topic, that they don’t get treatment that they don’t want. Of course, that happens all the time, but it happens a lot more to incapacitated patients because, of course, they cannot speak for themselves. So we have to rely upon advance directives, POLSTs, and DNR orders.

Kevin Pho: All right. Your KevinMD article is titled “Why problems with advance directives keep harming patients.” Ferdinando, for those who didn’t get a chance to read this article, just briefly tell us what it’s about.

Ferdinando Mirarchi: Thaddeus and I connected a long time ago, and we really just got to the point where we were talking about patient safety. You see so many different things published, like who says a living will is a binding contract? Who says it’s a conversational document? So part of this article was just about him and me getting together and saying, “Look, we have to put some sort of clarity around this so that people can really follow something, a guideline.”

Look, we make a lot of mistakes with advance directives. The scariest thing with advance directives and POLST orders is that when you talk to leaders about it, they know we make mistakes. They know we make mistakes, but everybody’s so grounded in what they’re doing that they don’t know how to change it and embrace things to make it a better place.

Look, this has evolved, right? One of the images in the article was about the evolution of advance care planning documents. We went from a DNR order to patient-to-clinician video. We’re hoping to make it better, but we’re still not there. We’re in the twenty-first century, right? We have to make it so that we now embrace technology to improve patient care, because we want everybody to have a say, and we need these documents. That’s really what the article was about.

Kevin Pho: Thaddeus, what’s the problem with advance directives and these documents as they stand today?

Thaddeus Mason Pope: Let me give the big picture first, and then I’ll zero in. There are a lot of problems with advance directives, and I think you might say that there are four big problems, right?

Number one is they’re generally not completed. Seventy percent of adult Americans do not have an advance directive. So that’s problem number one. By the way, CMS is working on that now, because there’s a new electronic quality care measure that will measure hospitals on the percentage of patients discharged with or without an advance directive. But that’s the number one problem: They’re just not completed.

Even for the subset of us who have completed an advance directive, most of the time it is not available. It’s not found, because there’s a hard copy, and it’s at the patient’s home in a drawer or a cabinet, and it’s not at the hospital. That’s problem number two, and by the way, we’re solving that one with electronic registries. A lot of states have their own registries, and there are private registries.

Problem number three: Let’s say they completed it and we have it, so we got past those first two hurdles. They’re often misinterpreted. I think a lot of what this article on KevinMD is focusing on is the misinterpretation problem.

Then the fourth problem, which we also get into here, is that they completed it, we got it, and we actually understand what it means, but they’re often not followed. Those errors go in both directions. We resuscitate patients who never wanted to be resuscitated, and we fail to resuscitate patients who deliberately made a choice for full code. So those are the four problems: not completed, not found, misinterpreted, and not followed.

Kevin Pho: Now, Ferdinando, you’re obviously an emergency physician. Let’s focus on the third reason that Thaddeus mentioned, the fact that they’re misinterpreted. I know you gave some examples earlier, but go into more detail about how they could be misinterpreted in a clinical setting.

Ferdinando Mirarchi: Think of this. This goes back to kids and stranger danger, right? We’re medical strangers to people today. We don’t know our patients anymore. First off, I’m an emergency medicine physician, right? So I don’t have a private practice, but private practitioners don’t come to the hospital anymore either. They’re all owned. Who are you going to? A hospitalist, a surgicalist, a trauma doc, the critical care doc. So every one of these patients is probably a complete stranger to the physicians and nurses now taking care of them.

In an instant, we have to make snap decisions, right? I could have a trauma, a pediatric cardiac arrest, a GI bleed, and a ninety-year-old DNR patient who we’re not really sure wants to be treated or not. We could have all of that in front of us, and we have to make these snap decisions in this little vacuum where you get a glimpse of information. That glimpse of information is the advance directive, and I call it the lethal glance, because in an instant we have doctors, nurses, and paramedics who glance at this document, don’t fully comprehend it, and were never trained on how to interpret it. They glance and then have to make a treatment decision. They have to make a treatment decision to put that patient in an ICU, to give them antibiotics, to give them blood, to resuscitate them and save their life.

We don’t get this right a very large percentage of the time. It’s unfortunate, because it’s really underreported. If we addressed this like we address wrong-site surgeries, this would get fixed pretty quickly. But we have to get better than variable interpretation. Advance directives and POLST orders only work if we all do it the same way, or at least have a high degree of accountability or fidelity to doing it the same way and understanding it the same way.

Kevin Pho: Thaddeus, why is there so much room for interpretation in these advance directives as they are currently? As Ferdinando mentioned, sometimes you have to take a quick glance, and these are life-and-death decisions, obviously. So the way the documents are drawn up, why are they sometimes so vague and open to interpretation?

Thaddeus Mason Pope: Well, the first problem, right off the bat, before we even look at the document and look at the words and the language on the document, is that the misinterpretation comes from the very existence of the document. One of the biggest problems, and this is well studied and documented, is the clinician knowing that the patient has an advance directive. They haven’t even looked at it. They haven’t even pulled up the document. From the very fact that the patient has an advance directive, many, many clinicians assume that the patient is DNR, without looking at what the advance directive actually says.

The same thing goes for a POLST. A POLST can be completed for DNR or not. But again, many, many clinicians think the very fact that the patient has a POLST, that it even exists, means that the patient is DNR. Now, of course, 70, 80 percent of patients who complete a POLST choose that.

Kevin Pho: But just for those in the audience who may not be familiar with the difference between an advance directive and a POLST, give us a thirty-second primer on what a POLST is.

Thaddeus Mason Pope: Advance directives have been around since the ’70s. A POLST has been around only since the ’90s. The acronym varies from state to state, but typically it stands for Portable Orders for Life-Sustaining Treatment. The idea is this: An advance directive is a recording of the patient’s preferences, goals, and values, but the clinician has to read it, interpret it, and then figure out what orders to write based on the advance directive. A POLST, as the O in the acronym POLST indicates, is already orders. So they’re immediately actionable: immediately actionable by the people in the ambulance, immediately actionable in the ED, and immediately actionable at the long-term care facility. You don’t need to do that translation process.

Kevin Pho: Ferdinando, you said that this needs to be treated like wrong-site surgery. So why is it that, typically, in the emergency setting, we only glance at it, when there are just so many different avenues we can go down when it comes to POLSTs and advance directives?

Ferdinando Mirarchi: I think it comes down to the sheer environment that you’re in, right? You don’t get tons of time inside emergency departments and ICUs to sit down and have a full-blown goals-of-care conversation with people. It’s sporadic. You get a little bit of time with this one person, you jump to the next, and you jump to the next. That doesn’t make it right, but it means that we need a stopgap measure.

You remember pain pumps, right? When pain pumps came out, they were like sliced bread. People had surgery, and they got a pain pump. I was like, “Man, I love these things. I don’t have to get called at two in the morning anymore.” Well, guess what? I started getting called, because everybody started overdosing on these things, and I had to come out and give everybody naloxone or something to save their life. That’s what we don’t have in advance directives. We don’t have that guardrail.

What we’ve done with patient-to-clinician video is really give it the opportunity to be that first guardrail here, and essentially make it so that we can stop and look at something the patient is actually expressing, to clarify what their intentions and wishes are, and do it in a way that takes less than five to ten seconds. We have to start getting to the point of really figuring out technology, really figuring out safeguards, and making it so that we can make these documents safe. We need the documents. We need advance directives. We need POLST orders. We need technology now to make it so that we really understand what the patient’s or the health care agent’s intentions are, so that we can align that care. That’s goal-concordant care. What we’re doing today is not goal-concordant care.

Kevin Pho: I want to talk about the patient-recorded video capture as a solution in just a little bit. But Thaddeus, the article says that 80 percent of physicians equate the mere presence of an advance directive with a DNR order. For people who don’t know or understand this, or who think that this is just a binary thing, give us a sense of the spectrum of scenarios that can arise from advance directives.

Thaddeus Mason Pope: Two things. First of all, there are a million advance directives. The state has an advance directive. Hospital systems develop their own forms. There are hundreds of apps, right? And the amount of reflection and deliberation that people put into it varies. Sometimes it’s the same amount of reflection and deliberation they put into ordering food on an app, right? So not a lot went into it.

But some people are going to have religious reasons, and they’re going to complete an advance directive that instructs their clinicians to give them all the aggressive measures that are technologically possible to keep them biologically alive as long as possible, because that, in their judgment, is actually required by their faith.

Other people are going to make the exact opposite instruction, because they’re going to say, “Well, if I can’t do the things that are meaningful and enjoyable to me, for example, if I’m in an unresponsive wakefulness state, if I’m permanently unconscious, if I can’t interact with my environment, then I don’t want to live like that. I can’t have any joy interacting with my family. So I wouldn’t want dialysis or mechanical ventilation or antibiotics or anything else in that situation.” So the choices people are making in their advance directives run the full spectrum, from “do absolutely everything that technology has” to “basically let me go, do nothing,” and everything in between.

Kevin Pho: Ferdinando, you mentioned short patient-recorded video captures that can express their wishes and desires. How does that work?

Ferdinando Mirarchi: We’re the first to put this into clinical practice. What we do is meet with people. We meet with patients, we do a medical consultation, and we risk-stratify them. We’ve formatted a prescription for their advance care planning and medical care that physicians can clinically interpret, and do it with a high degree of accuracy, right? In TRIAD VIII, we got people as high as 99.2 percent accurate in aligning to the same decision. That’s what we need to do.

Again, I don’t mean to say to save their life or to end their life. That’s a personal goal of a patient, and it should be a conversation between a patient and a physician to come to that decision and goal. But through video, we’re able to do this and make it more aligned, more goal-concordant. We’ve created it in ways that are very technologically savvy, so that there are do-it-yourself processes for the 80 percent of the population who just need an advance directive. Again, this is the first safeguard measure that we’ve really been able to come up with in research and put into clinical practice.

Then there’s going to be that other 20 percent, right? The people who have serious illness or comorbid conditions really need to be risk-stratified, to accept or decline mechanical ventilation, short-term intubation, defibrillation, and so on. The worst thing we could do is get to blanket statements. I saw something on LinkedIn yesterday where a pulmonary guy said, “You know what? I’m eighty years old. No eighty-year-old should be a full code. They should never have CPR.” Well, it’s not just that decision about chest compressions, right? It’s so many different things. It’s ACLS, it’s cardioversion, it’s IV fluids, it’s pressors. When you make a simple statement like that, you generalize a lot of things.

That also brings up one other issue: We have a lot of bias. We have a lot of professional bias when we look at patients and their advance directives. It’s ALS month, right? Recently, I might look at an end-stage or moderate-stage ALS patient. They have an advance directive, and they’re in respiratory failure. I’m looking at them and thinking, “Does that guy really want to know what’s going to happen to him later? Should I let him die now, or should I give him a chance to live and later be a victim of those other complications?” We have to take that bias out, because that’s not my decision. That’s a patient and family decision, rather than Fred or Dr. Mirarchi or Thaddeus or some team that’s going to render an ethical decision on whether that person should live or die.

Kevin Pho: Now, in a clinical setting, let’s say an emergency department, how are these videos typically accessed?

Ferdinando Mirarchi: We’ve gotten technologically savvy, right? The patients in my own clinical practice, where I do this, all get ID cards. They get something called a MIDEO ID card. They get one for themselves and one for their appointed health care agent. They get an in-case-of-emergency magnet for their refrigerator, because that’s where we train paramedics to look for advance directives, so they can scan it, get it, take it, and just go. We also give our patients decals for their car, so that tells paramedics where it is.

And then with tech, and again, this is what I’m saying, tech is so cool. With Apple phones and products, we can now get this into the Apple Wallet. We can get it into Apple CarPlay for the paramedics to see, not to mention getting it into electronic records, onto banner bars and icons, which we’ve gotten really savvy at doing over time.

Kevin Pho: We’re talking to Ferdinando Mirarchi and Thaddeus Pope. Their KevinMD article is “Why problems with advance directives keep harming patients.” Now I’m going to ask each of you to end with some take-home messages that you want to leave with the KevinMD audience. Thaddeus, why don’t you go first?

Thaddeus Mason Pope: Well, I would encourage all the KevinMD readers and viewers to make sure that both you and your family have an advance directive as well as a video advance directive. I’m sure you probably do this too: I go to medical grand rounds and ask how many people have an advance directive, and even among licensed health care professionals, it’s not a good response rate. So that’s number one. Number two, when your patients present you with an advance directive, make a really careful, good-faith attempt to interpret it carefully.

Kevin Pho: Ferdinando, we’ll end with you. What are your take-home messages?

Ferdinando Mirarchi: First and foremost, as you can see on my screen, it’s the twenty-fifth anniversary of 9/11. So thank you to everyone, and my thoughts and condolences go to all the friends and families of 9/11.

My take-home point is to act. Everyone’s going to downplay it. Everyone in current administrative situations and legal situations is going to downplay the risk. I got two cases this week. One was a wrongful prolongation of life case in which they’re suing for $9 million. The other is a case where a person’s advance directive was misinterpreted, and then an ethics committee came in and tried to push the family into a unilateral withdrawal of life-supporting treatment.

We have to get better. The take-home message is that you have to act now. Don’t wait for someone to say it’s OK to do. Get your advance directive created. Combine it with some sort of audiovisual technology, and it doesn’t have to be our platform. It could be your own platform. Do something. That’s the message I’m going to leave the readers with.

To the professionals, I say this all the time: Stop and ask questions. Don’t just assume. Don’t just assume it’s a DNR. Don’t assume that the POLST order is correct. Have a conversation with the patient, especially if the patient can talk, and have a conversation with the appointed health care agent. Those are going to be your safeguards to document in your medical record.

Kevin Pho: Ferdinando, Thaddeus, thank you so much for sharing your perspective and insight. Thanks again for coming on the show.

Ferdinando Mirarchi: Thank you.

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