Hidden Faults

COLD OPEN/ACT I

By the time my dad got sick, I had already spent years thinking deeply about end of life care.

There's a beginning to that story, and it also starts with my father.

Shoshana: My dad always joked when we were kids that I would go to medical school, which was very odd because I was terrible at science and math, like terrible.

But, much to my surprise, it turned out that my dad was right. And in 2006 I found myself starting classes as a first year medical student.

Shoshana: So tell me who you are, and how you know me.

Cara: My name is Cara Lutzi, previously Cara Tsoi, which is who I was when I first met you in medical school on our way to becoming physicians.

Cara: I still remember exactly when I first laid eyes on you.

Shoshana: I think it was the second day of medical school. It was in the basement of one of the science buildings on the campus of Oregon Health and Science University.

Cara: We were on the same cadaver during our anatomy class.

Shoshana: We named her Sally. Eight hours a day, I felt like in this room full of cadavers and learning about muscles and joints and nerves and blood vessels. And it smelled really bad, like formaldehyde.

Cara: We sat together in like the third or fourth row in medical school lectures

Shoshana: And we became fast friends. Kara and I and our other dear, dear friend Kathy, were just this crew and we figured out a way to kind of make it fun.

Cara: Getting takeout, studying together, hanging out on the weekends.

Shoshana: And then we'd have exams about every two or three weeks that were like, massively important. So we'd be cramming for these tests, taking the tests, and then partying. I remember dance clubs.

Cara: Oh my god, yes.

Shoshana: Very prominently, for some reason, and bars,

Cara: Lots of bars. Lots of drinking. Lots of dancing. Late nights. For sure.

Shoshana: For sure. And then Monday would come around and we'd start all over with a new set of things to learn about, kind of wipe the slate clean and move right on.

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Shoshana: I hated medical school. I really did. The first two years were so intense. They say this, it's like drinking from a fire hose. You just have so much information thrown at you. Things just that you have to memorize that are so complicated. I spent pretty much every day in the library for six hours, in addition to being in class for four hours in the morning. And because I was, like all of us that go into medical school, really, really type A and a total perfectionist. Anything below an A was, you know, failure.

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Shoshana: How would you describe the experience of medical school?

Cara: Totally humbling. I still remember, I remember the Dean gave us that talk in the beginning where he said, you guys have all been on this part of the bell curve, and that some of you are going to have to realize what it's like to not be in that top tail. I always felt a little bit inferior to everyone else as we're going through med school. I just felt like there were people who were like, they knew it was going on. They knew that they were kind of crushing it. They had an understanding even, I mean, I definitely remember you saying something once about. The cath lab. And I was like, what's a cath lab? I just did not know.

Shoshana: Do you remember learning anything about death and dying, or even palliative care in med school?

Cara: I don't. Do you remember? Did we have a lot of curriculum in med school?

Shoshana: I mean, I don't remember much. I think we maybe had one lecture, but honestly it didn't stick with me.

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Shoshana: It didn't hit home until I was actually a medical resident after I'd finished medical school and I was taking care of my own patients as a brand new doctor in the ICU when I realized, oh, wow, well, we do some wild things to keep people alive. And they don't understand, always, what we're doing because we're not explaining it. And we're not having these conversations. And we really should be, I saw just so much suffering, in and around the end of life for my patients, for their families, for the doctors, for the nurses, we weren't really on board with what was going on either, but it wasn't something that was talked about enough.

I’m Dr. Shoshana Ungerleider, and this is Before We Go, Episode 3: Hidden Faults.

ACT II

Cara and I happened to choose the same specialty: internal medicine. At the end of medical school, all students send in a list of where we’d like to go for training. Hospitals rank the candidates, and the results are announced on what’s called “match day.”

Cara: They set out your envelope. Enclosed in the envelope is your future, and they're just laying out perfectly neatly on this table, but you can't open it yet, you have to all open it at the same time. And there it is, your fate.

Cara and I matched at the same place – a small program in San Francisco that took just 14 internal medicine residents from the whole country.

Shoshana: So how did you feel when you found out that we'd matched at the same residency?

Cara: I was filled with emotions. I got my number one choice, which is wonderful, but it was bittersweet because I would have also just loved the safety and to stay at OHSU. Also really excited to get to move to San Francisco and, you know, be with you.

Before we knew it, Cara and I were settled in San Francisco, working at a busy, urban hospital.

Cara: I definitely always felt like you knew what you were doing and I did not. Maybe you didn't feel like that?

Shoshana: No, I mean, I definitely did not, I can tell you this, I did not know what I was doing.

Shoshana: In my first few months of taking care of patients in the ICU, I was so overwhelmed by how sick people were. All the new medications and machines and procedures I had to learn. I didn't know up from down. I, I really couldn't make sense of it all and just tried to keep my head above water.

Cara: I was the first one to cry, I think, in our class. It was so scary. I mean, starting on the coronary ICU, I remember one of the older residents signing out her team of patients to me, which was huge, terrifying. So sick. One individual had a ventricular assist device, which I didn't even know what that was, but I knew it was probably pretty scary. Like, just, it was just a total fire hose.

That first year of training was so intense, but there was still a little bit of time to live our lives. And about 8 months in, Cara was set up on a date by a college friend. That’s how she and I both met our future husbands.

Shoshana: I met Ed almost the same week I think that you and Aaron met. Did you know anything about Aaron's new roommate and did you think it'd be a good idea for us to meet?

Cara: Okay. Let me tell you when I first met Ed…I met Ed the first night I met Aaron, the very first night.

Cara: It just happened that it was going to be my birthday, and so I ended up inviting Aaron to come out and meet after karaoke, I think, just out at a bar, I want to say. And then Ed came with.

Shoshana: Ed was this guy who was just full of energy and had a million things he wanted to talk to me about. And I found him very annoying. It was a lot.

Ed: For me, it was great. was, like, super – I was super into you

Shoshana: Really?

Ed: Yeah!

Shoshana: I was tired and wanted to just go home. And so I kinda listened for a while and then said, you know, I, I gotta go. Here's my phone number. Call me sometime. Bye.

Ed: I didn't realize that, um, women would give out their phone numbers as charity, apparently that happens. It happened to me.

Shoshana: He ended up calling me a week later and inviting me over to listen to music with him.

Ed: A new Radiohead album that had come out, which I thought was a really good idea,

Shoshana: He's a musician among many other things. And I was like, I don't even know what you're talking about. Why would I come over and listen to music with you? No, thank you.

Cara: I remember once after that, I was going somewhere with Aaron and you said to me something along the lines of like, is Ed going to be there? Like joking around, like, like, Oh, Ed! But then everything changed.

Ed: I was admitted to your hospital with Appendicitis.

Shoshana: So, Cara texts me one morning and I'm taking care of patients in the ICU that month, and she says, well, if you're around, if you can pop over to the fifth floor and visit Ed, do you remember him? He's, you know, Aaron's roommate. So I was like, sure. Sort of knocked on the door and I was like, Hey, do you remember me? Sorry I never called you back and whatever. And he was charming and funny and sweet.

Shoshana: And he was in the hospital for about three days, had a successful appendectomy, but I kept going back to visit him and I would like bring him food and I don't know, just wanted to keep going back.

Ed: My first after surgery walk, we took a walk on, was it 5 South?

Shoshana: Yep.

Ed: And I looked out the window and the hospital is at the top of this hill and it looks over the Golden Gate Bridge and there were lenticular clouds forming over the Marin headlands. I'm like, you have to take a picture because you're never going to believe that this happened.

Shoshana: And I was like, how do you know the name of that type of rare cloud? And you said,

Ed: I'm a member of the Cloud Appreciation Society?

Shoshana: Yes, you did. And I was like, wow, this guy's a next level nerd.

Shoshana: So I thought to myself, what in the world? I don't like this guy. What am I doing? And then I was like, maybe I do like him? And so I texted Cara. I was like, I kind of like Ed. Is that weird?

Cara: I was like, what? Where did this come from? (laughs)

Shoshana: And she said, no, I think he's into you. And this is perfect because he's Jewish and you've been wanting to date more Jewish guys.

Cara: And then I think I actually did go to dinner with you guys

Shoshana: You were on our first date.

Cara: It wasn't I mean, I wouldn't say that it was like super magical? I’m not sure.

It was NOT super magical.

Shoshana: We go to this Vietnamese restaurant in San Francisco, which was delicious and Ed's like ordering the appetizers

Ed: I thought that I was being chivalrous and I ordered, like, the pork buns something. And you're like, oh, I can't eat that, I keep kosher. And I said, okay, I – I guess we'll have the spring rolls with shrimp. And you're like, what is wrong with you?

Shoshana: And he looked at me kind of blankly and is like, okay, just order whatever you want.

Ed: I thought you were just being mean to me because I didn't know. I didn't I wasn't versed in these details.

Shoshana: And Cara says to Ed, so Ed, do you usually only date Jewish girls? And he says, well, I've dated one before. Why? And she said, because you're Jewish. And he's like, uh, no I'm not.

Cara: Is he not Jewish?

Shoshana: Are you serious?

Cara: Yeah. I must have just thought he was Jewish because maybe he looked Jewish to me.

Shoshana: Exactly.

Ed still looks Jewish. We always say that he’s Jew–ish.

Cara: I love that.

It took a few more months, but eventually Ed and I figured it all out.

Ed: And since then, we’ve just been together. It was the best.

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Early in my intern year, which is the first year of medical training, I had an experience that started me thinking about the end of life…and what it can look like in a hospital setting.

Shoshana: So all the baby intern doctors, the interns have this required several weeks of night shifts, carrying what feels like 20 pagers on your scrub belt loop, but it's probably only three or maybe four. And you basically just have to cover the whole hospital because everyone else has gone home. And this particular night, um, a nurse called from actually one of the very quiet, more mellow wings of the hospital. And she asked me to come pronounce a patient dead. And I think my face probably turned white 'cause I was totally clueless about how to do that.

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Shoshana: I was all alone. And I literally googled how to pronounce someone dead, what to look for. And so I marched over there. My heart was pounding and knocked on the door and came into this really quiet room with the lights down low. And several family members were sitting in the plastic chairs. It was really calm.

This was the hospital room of an older woman who had been sick for some time. I learned from the nurses that her daughters and grandchildren had been there everyday, brought her her favorite foods and sat vigil at her bedside.

Shoshana: It's always weird to walk into a room where you've never met any of them. You know very little about them besides what's in their medical chart. And then to do something so intimate and personal to physically touch their loved one who's died. It, it almost like doesn't make any sense.

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Shoshana: I looked around to her family and, and just said, I'm, I'm so sorry for your loss. And they kind of look blankly at me, like, of course she's gone.

Shoshana: There was so much love in that room and people had brought in plastic bags of, of food. And I think there was, you know, at some points, music playing in the background. It was just as nice as a, as a hospital based death can be. I have pronounced many, many, many, at least hundreds of other patients. And, um, this one just stands out maybe 'cause it was the first one, but also because it was just, um, one that I feel like her wishes were really honored, even though I didn't know her and her family got time, uh, that they, that they wanted to say goodbye and be with each other, um, around the end of her life.

But soon I started to realize that the calm, peaceful death I had witnessed that night wasn’t what generally happened in hospitals. And that’s what really started me on the path to reconsidering end of life care.

ACT III

Shoshana: I started seeing this pattern of older patients who were being admitted to the ICU where the sickest of the sick, you know, land. And they were often dealing with a lot of chronic medical problems. And then on top of that had cancer or end stage organ disease.

By default in the U.S., patients receive aggressive, invasive treatment no matter how old they are, or how sick they are – and even if it may not help them – UNLESS they opt out or have someone advocating on their behalf.

Shoshana: And I realized that we weren't having conversations with patients and families about what it meant to be this sick, what was gonna happen in the ICU or what were the possibilities, the range of possibilities, and what their prognosis looked like, even if we weren't sure, of course. We often were just so focused on the minute to minute, hour to hour, day to day of what's their sodium level today? What is their blood pressure? And instead of taking a big step back and looking at kind of the bigger picture, really important conversations about is this person gonna survive this hospitalization? And is more treatment better for them? I was seeing it over and over and over where we just weren't having these conversations.

Cara saw it, too.

Cara: You start to feel like a manager. You're like system by system and you've got your problems and you just, you know exactly what you're doing. And they've gotten, you know, they're on this and that for their renal failure and everything down. You've got the code status, and you're just so organized. I feel like it's easy to get caught up in, did I get all the stuff? Did I hit all the systems? In a way, it's easier to step back and not question the whole thing because everyone's got their little piece of the pie and we're all busy.

And sometimes, what’s best for the patient gets lost in all of this. I remember one patient – a man from Russia.

Shoshana: He was in his mid eighties and Russian speaking and had been in the hospital so many times over the last probably year, and I'd taken care of him on the general medicine wards. I'd taken care of him in the step down unit from the ICU and in the ICU over and over. He kept getting very aggressive treatment, even though he was experiencing multi-organ failure. He was just so, so, so sick and so unhappy. That was the thing. You could just see him refusing to eat, saying, I don't wanna be here through the translator. Where is my family? Get me outta here. And that broke my heart.

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Dr. Jena: We often say that the way in which we are paid in this country is a driver of, of the kind of care that we, we provide. You know, the term that people use is fee for service.

That’s Dr. Bapu Jena. He’s a medical doctor with a PhD in economics who teaches healthcare policy and medicine at Harvard.

Dr. Jena: Doctors or hospitals are paid fees for every service that they provide. And there are sort of standard rationale is that if you pay someone a fee for everything that they do, they're going to have an incentive to do more. That's sort of a standard thing that people say.

And in the case of end-of-life care, this is often cited as a driving factor. But Dr. Jena has a different perspective.

Dr. Jena: Just like unpack it a little bit. When a person goes to the emergency department and the emergency room doctor says, I think you should be admitted to the hospital. Is that emergency room doctor getting paid any more for that decision? No, they're not getting paid any more. When the ICU doctor is caring for the patient, is that ICU doctor getting paid each time that person gets intubated, each time that person gets dialysis? No, they're not.

There are exceptions, of course. Surgeons generally do get paid for performing surgeries. And hospitals usually benefit when expensive, end of life care is provided to a patient. But Dr. Jena believes that has a very limited effect on the type of care that’s offered.

Dr. Jena: I just think that like when I was a resident or when I'm in the hospital now, thinking about people at the end of life, no one from the hospital is calling me and telling me, Bapu, you know, maybe, maybe push this person towards the ICU. Cause you know, this year has not been a good year for us. It's never happened to me. I've never heard anybody describe that. I think what it is is that even though there's not a financial incentive, a meaningful financial incentive, for a decision maker to make the decision that they do, it's functionally the same as saying there's no restraint.

And this is what Dr. Jena sees as the problem. Without needing to consider costs, doctors might suggest all possible options, even expensive ones with low success rates. This, combined with a cultural reluctance to accept death, leads to a tendency to pursue every possible treatment, no matter the cost… financially and emotionally.

Dr. Jena: Because doctors aren't responsible for the costs of the care that they provide, they, they don't have to consider it so much, right? So if I say to a patient, yeah, look, I think there's a 5 percent chance, 10 percent chance that going to the ICU might help your loved one live, you know, a few more weeks, a few more months potentially. At what quality of life? It's impossible to know. There's a small chance it would be meaningful, but it's a small chance. If there's no one there putting the brakes on that decision from a resource allocation perspective, then, what's the family going to do? They're going to say, well some families will say, well, let's go ahead with it. Let's try it. So I think it's the absence of the restraint as opposed to a set of positive financial incentives that are driving what we see.

And, in Dr. Jena’s view, it’s that lack of restraint that results in that pattern I was seeing in the hospital, where patients with very little quality of life were being subjected to invasive and potentially painful procedures – that had very little chance of success.

Patients like that elderly Russian man I was telling you about…

And just a little note here. If you're squeamish, you might want to skip ahead a minute or so.

Shoshana: It was another late evening on the night shift in the ICU when the code blue alarm went off and we quickly ran to the bedside of this patient. And because he was a full code, which means that he wanted every aggressive measure done to keep him alive, that's what we did. So we took turns, giving him chest compressions, which on his very, very frail body almost immediately broke his ribs. So with every push on the chest, we could feel his bones grating against each other. We probably spent 30 minutes, placing sharp needles into his veins and doing everything we could by giving him medication through IVs and putting a tube down his windpipe to help him breathe. And nothing worked. Um, and I just remember hearing that long beep of a flat line of no heartbeat and looking up at the team and just saying, “Is it, is it time?”

Cara and I weren’t together that day, but she experienced this kind of thing, too.

Whenever a patient’s heart goes into a rhythm that does not support the circulation of blood to their body, a full team rushes to that room to perform CPR and other measures designed to get the heart pumping again. It’s called a “code.”

Shoshana: What was it like to perform CPR on a very frail or an elderly patient?

Cara: I mean, you feel like I am hurting this person. That is always crossing your mind, even though you know okay, compress the chest to a certain depth so I can help the heart circulate blood. You're thinking about all the structures in between yourself and that person's heart, including the sternum and where the ribs connect. So, while you're doing that, you're thinking, I'm probably inflicting some harm at the same time as trying to save their life.

Shoshana: Yeah. I, I will never forget what it felt like to crack the ribs and then keep and then keep doing CPR. It was just, oof.

Cara: And like the patient's right there, you know, like their head is just right there by the chest. So it's like, it's almost like they're not a person, but they are. It's just this horrible dichotomy

Shoshana: Did you ever question whether all the interventions that were being asked to do were, were always necessary?

Cara: I think there's, there's so many moments where, I guess really, in a granular level, during so many codes, time, you know, time is ticking. You've been, you've been doing this for awhile. We're at like 15 minutes now. What are we thinking is going to actually happen here? You know? Like at what point are we going to, to stop? And so there's that kind of immediate situation. And then there's like the more, I guess the longer term situation where you've got a patient who has clearly been frail, maybe they're in and out of the hospital several times, and you're thinking, what is the purpose of, of this? Why don't, why do we need to expend all of this energy and effort and medical expense and emotion for this patient and the family?

Shoshana: That probably has no quality of life, right?

Cara: Guaranteed. The hospital is not a great place to be.

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Before speaking with Dr. Jena, I hadn’t considered an economist’s point of view on all this. And that conversation did add to my understanding of the forces at play. But I don’t think a purely economic view can explain everything that’s happening.

Shoshana: You bring up a lot of really good points and I'm definitely not an economist. So, you know, thinking about it in this context, I think is, is really, really helpful. And certainly, like you said, every individual is not thinking in terms of dollars and cents when we are making medical decisions and recommendations. But I do think that, do think that those incentives, even at the highest level, kind of pervade how medical education is taught and how we think about care. And it plays into this bigger cultural conversation about seeing death as something that we want to avoid at all costs. And in a lot of ways, I think that's true and important, but I also – maybe because this is the work that I do, I think that having an acceptance or a relationship with our own mortality can actually allow us to live better every day. And that while, certainly we want to live as long as possible, it's important to think about living as well as possible.

Dr. Jena: A lot of people don't give as much thought as they probably should to what to do when, you know, the body starts crumbling, but I think it's important, right? And as, as providers, we should be trying to make the time with our patients. Think about what we're incentivized to do in clinical care. We're not incentivized to have those kinds of discussions with patients. So that is a place where I think that incentives do really matter.

And when you’re a brand new doctor, it can be difficult to have these kinds of conversations with patients – even if you want to.

Shoshana: The hard thing about being a resident, being a trainee is that you don't always have the authority to jump into those kinds of conversations.

Shoshana: Did you ever push back with like with attendings as an intern or a resident on any of this stuff?

Cara: I did not. I am not a pushback gal, Shosh.

I pushed back. Or at least, I tried to. But it didn’t get me very far.

Shoshana: You know, no, we're gonna try this treatment next or we're not giving up on him. So it took a while for me to really trust myself and feel like these kinds of conversations were okay to be having.

But something happened during my intern year that gave me the confidence and conviction to try…

Shoshana: I was in the emergency room and this patient, who I will call Mr. Jones, came in with his family and he had lung cancer.

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Shoshana: His lungs had become full of fluid, which made it really, really hard to breathe. He could barely get outta bed and definitely couldn't walk across the room without collapsing. And I could tell that he was really, really scared.

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Shoshana: He hadn't been sick very long and he'd actually had a really healthy life up until that point. This was a different kind of patient experience for me. I don't know what it was, but I think I just had time to sit down and, and chat with him and to learn a little bit about his life and how connected he was to his family, who all lived nearby. And after reviewing the information and talking to his oncologist on the phone, I told him that I thought his cancer had progressed. We could put him in the ICU. Put a needle, you know, into his chest to help drain some of that fluid, but it would only temporarily provide relief. He was getting quite sick.

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Shoshana: He looked at me and tears were welling up in his eyes and he said, listen, I don't wanna be here. I just wanna go home. I just wanna spend however long I have left with my family. And as nice as this place is, it's not where I wanna be.

Shoshana: I had a realization then that stuck with me that focusing on all the details of patient care is absolutely essential and very, very important. But also getting to know patients as people, as often as we can is so helpful in providing the best care for them.

Shoshana: I was able to get him home the very next day on hospice. Our wonderful social worker and case manager worked miracles to get him out of the hospital that next morning. And I found out that he died a couple of days later, um, in the place that he loved the most, surrounded by his family and peacefully, with hospice care.

Shoshana: That, I think, was a turning point for me, uh, that it was gonna be so important. For me personally to really embrace these kinds of conversations with patients, even if I got busy, even if, it was chaotic wherever I was practicing, I knew that for me to feel good about being a doctor and a healer that this had to happen and that we need to change medicine. I think when you can wrap your head around the fact that doctors still have a place and a role in healing when cure isn't possible, it's really helpful and it's really empowering. There's always more that we can do. We're just changing our perspective on what care and what treatment is.

And so, I finished my residency with a determination to change the way we, as doctors, talk about illness and the end of life. Not just with our patients but also with their loved ones and with each other. But I wasn’t quite sure how to go about it.

Ed: I remember you having the vision, having the idea, but feeling like you didn't have the qualifications or that there was some secret that like some, some list of things you needed to know and you didn't know what they were, so couldn't do it. And I really just remember being like, you can absolutely do this!

That’s next time on Before We Go.