Allowing Patients to Die: Louise Aronson and Bill Andereck

Eric 00:00

This episode of the GeriPal podcast is CME eligible.

Alex 00:05

To claim credit, please go to the CME tab on GeriPal.org

Eric 00:09

Welcome to the GeriPal podcast. This is Eric Widera.

Alex 00:12

This is Alex Smith.

Eric 00:13

And, Alex, who do we have with us today?

Alex 00:15

We are delighted to welcome back Louise Aronson, who’s a geriatrician and author in the UCSF division of Geriatrics. Her most recent book is Elderhood. Louise, welcome back to GeriPal.

Louise 00:26

Thanks for having me.

Alex 00:27

And we’re delighted to welcome for the first time, guest Bill Anderech, who’s a primary care internist and senior scholar in Sutter Health’s program in Medicine and Human Values, a program that he co-founded with a former UCSF faculty member, Al Johnson. And he’s also chaired the California Pacific Medical Center’s ethics committee since 1985. Bill, welcome to the GeriPal podcast.

Bill 00:53

Thank you, Alex.

Eric 00:54

So we have a really interesting and potentially challenging podcast today. We’re going to be talking about…the title is Allowing Patients to Die. I think the theme is more saving someone’s life and the regret that follows. And for this podcast in particular, both Bill and Louise wrote articles that we’re going to be discussing particular patient cases. So while you don’t have to, we’re gonna summarize these articles. If you have a chance to read those articles before you listen to this podcast, I highly recommend that you do.

We were going to have them on the show notes to this podcast. Just go to GeriPal for this podcast, and we’ll have links to those articles. But again, I think you may get a lot more out of this if you read those articles first. But you don’t have to because we will summarize them, too. But before we go into all of that, I think, Bill, you have a song request for Alex.

Bill 01:52

I do.

Bill 01:53

Alex asked me for a song that was resonating in my head at the time, and it would be Guy Clark’s song, The Cape.

Eric 02:01

Why guy Clark’s the Cape?

Bill 02:03

Oh, it’s a long story. I’ll make sure. I grew up in Tennessee, went to school at Vanderbilt before I came to San Francisco. I spent a little time in Austin, Texas. This is in the early seventies, at the beginning of the music movement with Jerry, Jeff, Guy Clark, and all the crew, most of them who were rejects or transfers from Nashville. But that song has stayed with me, and I finally, the lyrics, I can’t help it. It gives a nod to Kierkegaard.

Eric 02:32

All right, Alex.

Louise 02:34

That’s awesome. That’s gotta be a first. Yeah.

Alex 02:37

Great choice. Here we go.

Alex 02:39

(singing)

Eric 03:18

Thank you. Fabulous. Okay, we’ve got a lot to talk about. We have two articles, but I’m going to throw in a third. Actually, it’s not really an article. It’s something Alex and I were talking about. The patient case. Dax.

Alex 03:33

Yeah. This was a famous case. It’s much discussed in bioethics courses in Beauchamp and childress’s principles of biomedical ethics. This is the case of Dax Cowart, who, 1973, was in a horrible burn accident. He was a 25 year old guy, former captain of the football team, former air force pilot. His father had inadvertently parked his car on top of a propane pipeline that was leaking and the car exploded. His father was killed. He was horribly burned over most of his bodies, lost many of his fingers. A farmer nearby came to. To rescue him and he said, can’t you see I’m dying or I’m dead? I’m gonna die. Just get me a gun.

He had a 14 month recovery in hospital and rehab and continually asked to have life sustaining treatment suspended so that he could be allowed to die. Doctors did not listen to him, and afterward he said he was glad to be alive and not. But, but. And the doctors should have listened to him and he should have been allowed to die. So that is sort of like the fundamental case that started this controversy.

Eric 04:46

Yeah, well, that was in the seventies, Alex. Would that really happen nowadays? Which, for those who haven’t read Louise’s article, knows that that’s a leading question to Louise.

Louise 05:02

Yes, well, I don’t know about 2024, but in 2023, yes, it could happen. It happened to my mother.

Eric 05:10

So if you can summarize again, listeners, we have a link to this article on our show notes. Louise, what happened to your mom?

Louise 05:20

So my mother, just prior to her 90th birthday, got Covid for the first time. This was fall of 23, and we got her to the meds that night. And she was doing great until on Sunday morning, clearing her breakfast dishes after reading the New York Times, which tells you about her functional status for the journey, listening, she went down, basically syncope, hit her head, was on a blood thinner because of some long ago Afib, that is another podcast. So she bled a lot and finally called for help and was transferred to the hospital, where she started crashing in the trauma room. Initially did well. It was clear.

It seemed likely it was just the blood loss and volume, and so I. I kind of thought about it. She had forever said, let me go. I’m not brave. She was very clear. Like, I don’t want to suffer. I don’t need to do suffering. And now I’m almost 90, so definitely I don’t need to do suffering. Anyway, I did. Because her functional status had been so good, and it was this episode. I initially said, okay, let’s do fluids and one presser, if one presser doesn’t.

Eric 06:37

Was she not able to participate, or did she have cognitive issues, or.

Louise 06:43

She was sort of riggering. And she agreed. I mean, so she actually kept calling out, like, I’m fine with dying. I don’t mind dying. I don’t do suffering. And literally everybody was laughing because she was so clear on that. And she was also. Louise knows just what I want, because literally, starting in my internship, which was 1992, I’ve been hearing all the way, she does not want to die. So we did this one presser, and she did well. Went up to CCU because she’d been given the pressure, you know, I don’t want to go into the whole thing.

But anyway, she also had a procedure, which everybody decided was fine, and then basically relieved that she’s doing great, and she chokes on a pill, goes into rapid Afib, and they call me in the middle of the night about giving her a transfusion, which is not consistent with her goals. So I’m like, no. And they’re explaining that she’s going down to radiology. And I said, no, no, you don’t need to find out where the bleeding is, because we wouldn’t do anything about it, and they won’t listen. I go in. They wouldn’t let me in. When they finally let me in, I literally. I got my 10,000 steps pacing outside the unit. They would not let me in. She had everything she never wanted, and there followed months of agony and recovery that she also didn’t want. And she’s doing great now, and she wishes they had let her die. So it’s really just like Dax in many ways. And there’s more to the story, but you can see both sides. She was highly functional, but then she’s very old.

Eric 08:16

It’s interesting because if you look at it from hospital metrics, it’s a success. She didn’t die in the hospital. They saved her life. And yet it sounds like, does she have regret that she’s still alive or regret that they did what they did and that she didn’t die, but she’s okay with still living? Yeah.

Louise 08:41

So she’s okay with still living. She’s not really the sort who gets depressed or anything. And, you know, life is getting smaller in the ways lives do, but she’s a pretty happy person. But she also thinks that would have been the perfect death. You know, she would have had 90 really good years, and she would have just gone into a coma with no blood pressure and died, you know, with, like, a day and a half of illness. I mean, that’s a pretty good outcome at 90, sort of optimal, but she wasn’t allowed to do that.

And in fact, I was having this conversation in the hallway with the cardiology fellow in attending, both of whom came in in the middle of the night, and we’re talking to one to 05:00 a.m. there. And they were like, but we can fix this. But that’s not the point. And so one of my other points here is that we had a really detailed code discussion in the trauma room. You know, people were laughing and participating. None of that appeared in the chart.

Eric 09:38

What did appear in the chart?

Louise 09:41

Really very little. I’m actually kind of shocked as a person who hasn’t done hospital medicine in some time. Like, what happened to, like, admission notes.

Eric 09:49

Code status, DNR, DNI?

Louise 09:51

Yes. Yeah. I mean, absolutely. There was no way we were going to do that.

Eric 09:55

But we had agreed. But that’s probably the chart. What appeared in the chart of.

Louise 10:00

Yeah, yeah, that was it.

Alex 10:01

But can I just go.

Louise 10:02

The nuance.

Alex 10:03

Can I just go back to something you said earlier? Because I just want to. If I heard correctly, you were saying since 1991, you’ve been hearing it, that your mom said she. I heard you say she didn’t want to die.

Louise 10:14

Oh, sorry. I might have misspoken. She has been telling me all the ways she doesn’t want to die. So she’ll hear the story of something. She’ll be like, that’s awful. I don’t want that. Or that. You know, she just. Everything scares her, so she’s like, no.

Bill 10:28

I don’t want that.

Eric 10:29

I don’t want that.

Louise 10:29

I just want to be comfortable and die.

Alex 10:31

Ah. So she’s saying, I don’t want this aggressive intervention. Yeah, I don’t want to. I don’t want to die in that way.

Louise 10:38

Right? In that way. And the number of ways now is a scroll that could extend across the city.

Alex 10:44

I see.

Louise 10:45

She just. This would have been her perfect ending, as expressed very, you know, very, very frequently since 1992.

Alex 10:52

Yeah.

Eric 10:53

Well, let me ask you this as a geriatrician, Louise, is there something to like when you’re younger, you think about all your hopes, like your hopes, the life that you want, your hopes for, the life of your kids that you want. You occasionally think about your death and maybe your hopes for having a peaceful, quick death or not, but is there something that happens as you get older, wherever you still have these hopes for your life and your kid’s life, but it becomes much more in your face, kind of those hopes for how you want to die. And is that something that happened with your mom?

Louise 11:34

Yeah. I mean, actually, we discuss it a little less often in the last year, but I would say in the five to ten years before that, we discussed her death. In most conversations, this is really not an experience this woman wanted to have. It’s sort of a joke on the phone, like, could we have a whole conversation without this? And, you know, it has waned now that she’s lived through this, but. Or maybe as her cognition, et cetera, changes, but she was as clear as a human being can be. And we made that very clear in the trauma room, and I made it very clear to the people in charge when I was not allowed into the unit.

Eric 12:10

One theme that came out of that, just looking at the responses to your article, was there’s more to goals of care discussions than code status. There’s more to it that you should be documenting than DNR DNI, which seems like. Yeah, probably most of our listeners would agree with that. We need more. Was that your main theme that you want to get across to the audience when you’re writing this?

Louise 12:38

Yeah, I mean, DNR DNI, like, in the setting of a 90 year old who’s had a big bleed and has some Parkinson’s and mild cognitive impairment, and with a role later, like, if her heart stops, you know, what are the odds? That does not seem like the relevant conversation to me. It’s all this other stuff that matters. And I have, I think, since residency, had a menu for people. Like, there’s this and this, and you just kind of work until you find the sweet spot for them. And some people can’t have that conversation, but I find a lot of people can, especially if you do it over time.

Alex 13:17

I want to bring out another theme, one prominent theme that is shared by both the story of your mother and the story of Dax and that is this duty to rescue. And I wonder if you could put yourselves in the shoes of the cardiology team, the ICU team, and thinking in their best sense, what was it that drove them in this instance? Giving them all the benefit of the doubt? What motivated them? Any thoughts about that?

Louise 13:48

Definitely some thoughts, and I think slightly different for different people. You know, the covering resident overnight saw this woman in the CCU. So she assumed, you know, do everything right reasonably. Another reason why maybe documenting in the chart and not having, you know, like our advance directives are usually hidden away. I think if you’re 90, that needs to be, like, top of everything. But another bias of mine, I think for the cardiologist, part of the problem was that she had choked on a pill. So in some ways, it was an iatrogenic event.

There was also a second event in that the pressures chosen weren’t the ideal ones. They further increased her heart rate, lowered her filling, lowered her output, etcetera. So, yes, they could fix it. And I think you feel more compelled to fix something if it kind of happened on your watch, if it wasn’t really necessary. I mean, obviously nobody fed her the pill with the intention of choking her, but it wasn’t like suddenly she had another event out of the blue because she had a bad heart. So I think that was a factor also that they thought, like, this is fixable. This shouldn’t have happened. We can make this better. If she was looking good earlier this evening, she can look good again tomorrow.

Alex 15:13

This is really complicated. There have been nursing homes that have been sued for patient chokes on some food is DNR DNI, and nobody goes to help the patient perform a simple Heimlich because they’re DNR DNI. And yet that’s nothing. The scenario they were envisioning when they created that, when they signed that directive. So what advice would you give to our listeners or to learners as they’re thinking about the complexities of this topic?

Louise 15:47

Well, I think even in that example of choking in a nursing home, you don’t actually require cardioversion or a breathing tube. You require Heimlich. So it kind of brings us back.

Bill 16:01

To.

Louise 16:04

Very particular situations. And you’re allowed to use your brain. It doesn’t mean no care. I mean, imagine choking to death. Does that sound fun? I don’t think there’s any age at which that would be a good way to go. So I just think we have this focus on DNR DNI, and part of that’s policies, right? You walk into the emergency department, which I have done with many older relatives at this point. And it’s one of the things you need to tell them absent the important conversation. And then, as I said before, in the EMR, it does not appear where it should, particularly for people with certain health status or maybe over a certain age, where you would draw the line. That’s a whole other conversation.

Eric 16:47

Bill, I wonder, from your perspective, after hearing Louise’s story, what’s popping into your mind a lot.

Bill 16:55

First of all, I just have to go back to Dax, because Dax in 1973 is when I first came out here as a senior medical student and met Al Johnson. And as you can imagine, it was the story of the times in that brief group of people that call themselves ethicists. And I followed that story ever since. The biggest point I would bring out between that story and many others and something that I think is a huge bias in all of our minds. And I, first of all, let me just say, I don’t consider bias a negative term. I consider it a neutral terminal. You can have positive bias. You can have negative bias. Aristotle considered virtue of bias to the good, so.

But, you know, among those biases, when I asked our residents, when I tried to get to some of their understandings of how you make difficult decisions to discontinue treatment, almost every one of the most common thing that came up was age of the patient. Now, these are 25 year olds, but age of the patient was the first thing that pops to their mind when they’re starting to decide what they’re going to do. Now, there’s reasons for that. There’s prognostic indications and everything else and all the concepts of potential versus lived life and lots of reasons for that. But in the heat of the moment, it’s that number that seems to cause them to be either a lifeguard or a step back and let nature take its place. Louise had a number of things I totally agree with.

First of all, the concept of code status. I mean, it’s becoming a joke. It’s like comfort care. It’s a euphemism. And to some extent, all we want to do is get that box checked and moved on. Fortunately, at Sutter Health, we do produce that box quite visibly to everyone. So at least I would hope that this, her mother was not in a Sutter health hospital. But we do a horribly mangled job of it. Horribly mangled. Talking about code in a situation where someone, if they’re going to have anything, they’re going to have a septic death, they’re going to have something else. They’re going to bleed. That’s not cardio. It’s different. And so we’ll see people, we won’t pound on their chest, but we’ll do everything else in this misguided sense of, you know, this is what we’re supposed to do.

And I have many, you know, the patient’s response is to this. A great one quick story. I had a lady who, I started taking care of her in her mid early seventies, and the very first vision visit I had with her, she said, I want to die. Will you just help me die, doc? I want to die. I really want to die. And I would just point out this lady had been on meprobamate, which is an antidepressant that came into use in the fifties, mao inhibitor that no one wants to touch, even me. But this lady continued to see me every three or four months and routinely asked me the very same question. But she didn’t die. She didn’t even make any efforts to die. She entertained her family. She had grandchildren. They were coming around and all the time. But every time she said, I want to die.

So fast forward now, she’s about 87, and she’s in there with her daughter, and she says, doc, you know, I want to die. I want to die. After the first of the year, I’m ready to leave this earth. And I said, well, you know, okay, you know, I’m certainly not going to do anything to stop you, but you don’t seem very, you know, don’t seem up, but I want to die. And I said, well, wait a minute. Thanksgiving’s coming up, you’re having your family, Christmas coming up. You’re going to go traveling to Hawaii with your family, and, you know, you want to die in January. Yeah, that’s what I want to do. I said, okay, well, we’ll have to talk about this at your next visit. And I said, oh, and by the way, do you want a flu shot?

She looked at me and said, of course I want a flu shot. I sat there and I looked at her and said, wait a minute. You just told me you want to die. Why do you want a flu shot? And she said, I don’t want to get sick in the presence of her daughter. I said, how the hell are you going to die if you don’t get sick? This, he actually lived on for about another nine months, fell and broke her hip. And sure enough, yeah, we hospice and let her die at home in a couple days, very quietly. But, you know, alan, I used to laugh about it. People say things and they don’t understand the context in which those things may actually occur.

And how do you protect yourself? Well, a big piece of pink paper on the refrigerator door might help, but I was actually in the group that actually started the pulse form, and it is not being used the ways we intended it. The intention was to place it in the beds in nursing homes. So elderly people who aspirated, got pneumonia, had an mi, didn’t get hauled off to the emergency room on an ambulance crew so they could die in the ER. That’s why we did it. Now I’ve got 45 year olds asking.

Eric 21:45

Well, we got a lot of potential angles here that we can go. And, Louise, I wonder, from your perspective, as somebody who’s thought a lot about ageism, we’ve had you on this podcast to talk about ageism, going to Bill’s. He’s bringing up, like, when you ask younger, like, trainees or physicians, how they think about it, like, age becomes important. We’re talking about older adults who are in that. Your mom is in the situation. Is ageism playing a role here in how we’re thinking about this, or what role does it play?

Louise 22:21

Yeah, I think there’s, as with so many things, particularly in the summer, in which we’re having this conversation, but, you know, there are situations in which age realism and ageism are dancing around each other.

Eric 22:38

Tell me what age realism.

Louise 22:40

So I think realism is if you are frail, bedbound, all your friends and the people you care about are dead. You’re incontinent, you’re having trouble seeing, hearing, using your fingers, your quality of life is not very good anymore. Then thinking that that person has both less quality of life and less life to save them for versus a 25 year old is simply fact. Right now, they may feel that’s adequate quality of life for them, and that’s their call. In our country, in many countries, it’s not. But I think we can say there’s less to save there. In terms of time. I don’t think you can bring function in because then you get into all sorts of other prejudices, including ableism. So I think some of it is age realism.

What you’re saving is less if you are very old and frail already. But I think there can be ageism in the sense of, when I think back to myself as a resident, I don’t know how much I could tell the difference between a kind of frail 67 year old and an 87 year old. And there’s actually kind of a big difference now. Functional status matters. Maybe the 67 year old had a big burden of disease. But when you’re pretty young, when you’re in your twenties, it all kind of blurs out there. And so I think there’s an ageism, and we’ve certainly seen that in the political arena, where if people are showing signs that maybe they don’t have the stamina going forward for an extended period of time, we assume that everybody at that age lacks that stamina, and we use age as a proxy, whereas we know as people grow older, there’s huge variability. So I think you can have both simultaneously, and that we see that a lot.

Bill 24:35

One thing I would bring up on the age thing, and this I can say, because I’ve watched it myself, I just turned 75 years old. So I get. I won’t call it old, but I’m certainly a senior at this point. There’s a lot of talk in the ethics literature. There has been about the future self, especially in the demented patient who, you know, goes off, says they don’t want to eat, but then eats, et cetera. The future self. I don’t think we pay enough attention to the past self, because I am not the same person I was when I was 30 years old. I don’t like the same music. I don’t enjoy the same things. You know, I reflect on them very positively. But it’s been a while since I’ve been to a grateful dead concert. Not to say that I won’t go to the sphere again. You know, I’m a different person, really am. And my ways of thinking and everything else have changed. And I can’t really put it into much more specifics than that, other than that’s what it is. I’m just a different person. And how that changes over time. That’s fascinating.

Alex 25:38

That’s a good segue.

Eric 25:39

I actually do think it’s a good segue. I just want to highlight one thing, because there is this bias in human nature, is that we can acknowledge how much we’ve changed from our past selves. But there is some literature behind this. But when thinking about the future, we think we’ll stay the same. So it’s this weird dichotomy of, oh, yeah, the future self. I’m going to be my future self, man. I’m totally different than I was in my twenties.

Bill 26:08

Speaking as a young man, there’s a tipping point when, after a while, you begin to see the future. This is what Louise is. Well, I do think, where are my fingers? Where are my vision? Where’s my ears?

Eric 26:21

Do think this is a nice intro to your article. Cause it does bring up the question of adaptability. When we think about things that we don’t want, disability placement in a nursing home, we’re thinking about our future self, not our current self. And how do we weigh all that together? So, Bill, do you wanna describe what you wrote in your article?

Bill 26:45

Okay. My article entitled Sam reflects back on an experience I had, and I believe it was probably 1983. It was a patient that I had taken care of, actually, as a resident, who followed me into my growing private practice. And I was giving the first dinner party I had given in with my new wife in our new apartment, and we had six or seven guests there. And the phone rang. I went to the phone, and sure enough, it was Sam. He said, bill, I’m calling to say goodbye. I said, where are you going? He said, to heaven, I hope. But basically he told me that he had attempted. Not just attempted, he was killing himself. He had injected himself with a bottle of insulin and that he was just calling me to say goodbye.

He called three others, best friends, told them what he’d done, told him goodbye, and he. I was the fourth one on the list. He made it very clear that he called me by looking my number up in the phone book. Things we had back then, no answering service, no record of the call. And he said, bill, I just want to say goodbye. I want to thank you for everything you’ve done. And it’s my time, and there’s nothing you can do because you don’t know where I live. And that’s just it. He said goodbye. I said goodbye and hung up, sat down, went back to the dinner table, sat down, poured myself a big glass of wine, and proceeded to discuss with my dinner guests. This is pre hipaa, I have to admit, the dilemma in which I was facing. And I told them, basically, Sam was an interesting man.

He had a previous life in Cleveland where he’d been incarcerated for over ten years for killing a man with a crowbar. After he got out, he came to San Francisco to kind of start a new life, which began and ended in the tenderloin. He did have a habit of drinking a bit and drank quite a bit. He was a terrible diabetic. And what was happening was he was, due to his neuropathy, was about to lose his. His legs. His legs. His hands were gone. And he had a deadly fear of being institutionalized, based on his previous present experience. And so that was his biggest big fear. And I sat down, I talked to my dinner guests. They all just went batshit over it, saying to my God, you’ve got to call. You got to help him. This is a cry for help. This is a cry. People who are committing suicide don’t call and tell everybody what they’re doing, but you got to do what you can.

And what made it even more difficult is I’d filled out some paper form for medi Cal forms a couple days earlier. I actually knew where he lived, his dress. For some reason, anything I write down stays in my brain for at least three days. And I had his address. And so I thought about it a while, called, and sure enough, they brought him up to the emergency room. I headed on up there, where he was screaming over the fact that he screwed up because he used NPH insulin instead of regular. If he did regular insulin, he would have certainly killed himself, but just miscalculated the dose, I guess. Anyway, we resuscitated him as best we could, stayed in the ICU, and then ended up in a nursing home. One thing I did say during the phone call, as we were about to hang up, as I said, sam,

I wish you’d sent me a letter. So a month after he was discharged, I went to see him in his nursing home, where we had a wonderful time, talked, laughed, talked about all the things that, you know, his life in the tenderloin and everything else. And as I was going to leave, he said, bill, I know you did what you had to do, but I wish you’d sent me. I wish I’d sent you a letter. And he died a few months, probably a couple weeks to a month or two after that. And I reflected on that in my epilogue, because, you know, the question is, did I do the right thing? And some of it, I think, is, like I said, I’m a different person now than. Than I was in 1983 or so, but I think it’s a different issue than that. I really think that the issue was, as I reflected, my earlier mentor before Al was Edmund Pellegrino. Pellegrino and Tomasma were two of my favorite, favorite people.

And as some of you may know, Pellegrino is probably the master of virtue, ethics and responsibilities and obligations of a position. And ed imbued in me the concept that physicians are like lifeguards. They have a special skill, and when they see someone who needs it, they need to use it. And I was. I bought into that. I was a great lifeguard for a long time. Still am when I need to be. But the thing was, there was also this idea of, you don’t want to get to know your patients, you must remain objective. You cannot make good decisions if you’re not an objective physician. And believe me, I believe that completely. And I thought that made a total of sense. What’s happened in my practice since I’ve seen these people for 30 plus years, I’ve gotten to know them as people, not as patients. I know their children.

I know their desires. I know where they go for vacation. I know what they like to do, what their goals are, what their values are. That makes it really special for them and for me. But in a way, I kind of evolved into what Pellegrino called the friendship role. A friendship role is very, very different. I think when you adopt a friendship role, you do have the ability to incorporate the values of your patient or your friend, and you know them in a different way. But my real regret, and this is, and I don’t want this to sound like sour grapes, but it’s just, it’s harder and harder to maintain or to even establish that friendship role in modern medicine. Now, there’s no continuity, particularly in a hospital where the man who asked about your advanced directive is not the woman who’s carrying it out the next day.

Eric 32:36

Yeah. So similar to what we’re seeing with Louise is even if you had a conversation the day before, the night before, nobody knows about that conversation the next day.

Bill 32:45

In our desire for efficiency and quality, we have abrogated continuity to epic. And it’s not the same, but it does provide information. But as I was taught by one of the greatest clinicians I’ve ever known, it said, the exam begins when you enter the room, and it begins with your nose.

Eric 33:05

Well, let me ask you this. Is that part of this theme of this? Is this, you know, this lingering regret after saving a life, and you saved life. Louis’s mom’s life was saved. And there’s this potential regret. I wonder, though, in your particular case, Bill, you only have that regret because you’ve seen what happened after intervening. If you didn’t intervene at all and he were to die, you’d also potentially be, wouldn’t you have lingering questions? Was he depressed? Was he rational in doing this? What if I saved his life and he comes to me a week later and says, thank you very much? And I can also imagine this for the CCU resident, like all of this is happening, the irreversibility of death. If I just let them die, we can’t reverse that. But if we do these temporizing measures, if we do this intervention, they’ll still be alive. They can always stop things in the future. If they wanted. But yet you don’t really know.

Bill 34:11

First of all, I think if Sam had called me today, I would have just hung up the phone and gone back to dinner, as I now, as I know Sam and as I knew him. But I was as, hey, I was different then. Secondly, one of the things you got to learn in medicine is there’s a hell of a lot of things worse than death. And some of them are the ways in which we keep people alive. The other issue is for that, and I’ve had them both. I’ve had them both ways. We’ve resuscitated people. And I went to with my whole ethics team once and said, ma’am, did we do the right thing? He looked at me and said, no, I see it. But I’ve also had people come back and say, thank you, thank you, thank you. But one of the things I worry about, when we really know medically where this case is going and we find, how many times has this happened?

Louise, I’m sure you’ve seen it, or maybe in the ICU where we’re trying to wake the patient up so that they can tell us to quit. I mean, that’s crazy. But when we know this guy or this woman is never going to make it out of the hospital, is never going to regain any semblance of a human function, we’ve got to understand it’s time to let go. And not everyone can. My favorite was Neil Cohen. I don’t know if any of you remember. He’s probably before your time. He was the master of the ICU at UCSF, and his line was classic for medicine. It was, no one dies in my ICU unless I let them. And frankly, that attitude is still there. Now, I don’t have a problem with that attitude as long as they’ll sit down with the bioethicist and decide whether or not it’s time to let them. But without that reflection and the ability to say, okay, it’s time, which is what’s missing. If you’re just nothing but a lifeguard, we have a problem.

Alex 36:06

Let’s turn to Louise and get her thoughts on this. And just by way of a prompt, which you can or can leave or take as a way in, it seems like you’re talking about a different sort of duty to rescue or a different way of saving a life. I think, as Louise said in her piece. Louise, what are your thoughts on this?

Louise 36:24

Well, that was exactly what I was thinking. I guess, predictably, I think it sort of hearkens back to Bill’s point about the fragmented system and what people do and the lack of continuity. When you’re in the hospital setting, people like it because it’s discrete, right? So they save the life and they think, oh, great, I saved the life. And they send people out into the world and they don’t actually see what their life is like after that. And often they don’t know what happens to them. But as a person who’s done primary care and house calls, I know what happens. And often what they have preserved is not so much the life, but the suffering. They have ensured weeks or months and sometimes years of obscene suffering and not really giving the person the real choice.

You know, when they say, we’re going to save your life, a person has a certain image of like, oh, I’m going to have my life that I want back. And I think when we train people so much on the inpatient and have no continuity, they don’t understand what they’re doing. And so it seems like the job is to save a life. Well, maybe saving a life is giving the person the best possible life and respecting their wishes. And if it’s all suffering, maybe their option. Some people will choose to suffer, but a lot of people will choose to die.

Eric 37:43

Oh, yeah, I got a question then. Thinking about future self and the challenges we have, thinking about our future self, how much of this is just like ableism, like, because when you talk to people, would you want an amputation? Most people say, no, my quality of life would be terrible. You ask people after they have amputation, their quality of life isn’t bad. You ask, you go to unlock, which Alex did. People, older adults with a lot of functional impairment, you’d think, my God, well, their quality of life has to be terrible. Alex, what did you find?

Alex 38:14

Yeah, most of them said their quality of life was good or better than some of the minorities said, you know, great, we adapt.

Eric 38:21

Bill’s kid, they didn’t want to live in a nursing home. You talk to people in nursing homes, you know what, a lot of them feel like their quality of life is pretty good in nursing home. They don’t want to die.

Bill 38:31

Now you’re talking about a real bias, and that is the bias to, I know what you want. And some of it falls in the concept of what the word we use is quality. You fell into my trap. The word quality is a terrible word. Quality of life is probably the most confusing concept you can come up with for a very simple reason. Quality has at least two connotations. One is an excellence. This is really high quality. The other is an essence. This is the quality of this substance. Life as an essence is probably the area in which physicians can have some say about, this is going to work or not, but life is an excellence. How good is it? That’s really not our decision. That’s the decision of the bearer of that life.

Eric 39:28

But what I’m asking is quality of life.

Bill 39:31

What are you talking about?

Eric 39:33

So, yeah, so, again, I think the question is current self versus future self, and the bias that you have thinking about states of disability and the poor quality of life that you potentially would have. But then your future self, future self is kind of okay with that. And this goes back to the biases, like Zeke Emanuel. When I’m 75. Is it Zeke in Emmanuel? Yeah, one of the Emanuels. Zeke, I’m 75. I’m gonna stop everything, all my mads, no interventions. Like, I bet when he’s 75, I don’t know, how old is he right now? He’s still gonna.

Alex 40:07

We have to do a podcast with him when he turns 75.

Eric 40:11

Louise, what do you think about that?

Louise 40:13

Well, I mean, I agree that quality is totally in the eye of the beholder, but. But there’s also a difference between how much function. Yes, you want to have a certain amount of function, but what counts if you’re bed bound and lying in your urine most of the time? That’s not something I’ve ever met anybody who aspires to. Whereas using a rollator or a walker, that’s not so bad. I do that now. I’d rather not put it off a couple of decades, but that’s not so bad. I do think there’s sometimes overlap, but you really have to talk to the person. I mean, this was why I could be so confident, because I’ve literally been having this conversation with my mother since 1992. On the other hand, I have a patient I’ve only seen a few times that I saw last week. He’s 80, and he’s like, wow, I know.

The eighties are different. I have friends in terrible shape, friends in great shape. The only thing I know for sure is that I want to stay in great shape as long as possible. And if something. If I have something really bad, I want to die as quickly and comfortably as possible. And he’s got huge, good functional status, but he is realistic about it. He’s thought about it a ton. So you just have to talk to the person.

Bill 41:24

And, Eric, your comment about how do we predict the future basically is the problem with all advanced directives. Yeah, advanced directives are a very naive idea with a lot of unintended consequences. When my patients come to me with an advanced reactive, I say, well, you can check the boxes, but frankly, the only thing that matters is that blank section in the back where you talk about what your goals of life are and who you assign to interpret those goals of life. All the rest is irrelevant, in my opinion. I’ve seen it just rapidly becomes irrelevant. Listen, this is what we do in the hospital. We consult all the time on patients who have advanced directors who say one thing and we’re in a situation where it’s clear they want to do something else.

Eric 42:11

But how much of it is like Winston Churchill, like, democracy is the worst form of government. Besides all else, like, yeah, there’s things. What’s wrong with advanced directives?

Bill 42:22

I did not.

Eric 42:23

We desperately need them because the alternative is horrendous.

Bill 42:27

I was involved in the one that wrote the California Advanced Directive act, and I’m the person who’s responsible for keeping that box on there that says, do everything, regardless of what effect it’ll have. The reason I kept that box in there so we can identify the crazies, because when somebody checks that box, they have to have a nice discussion with me or someone else.

Eric 42:47

Well, I want to.

Bill 42:49

It’s not perfect. It’s not perfect, but I agree. But you have to look at how it will occur. And I do think the best way is to have one who knows you, who’s listened to your life story and can represent you as best they can, and still they’re wrong.

Eric 43:05

And, Alex, before I go to my magic wand question, do you have any questions?

Alex 43:09

Okay, well, I was just going to suggest that the magic wand question be something about how you would change medical training in order to address these issues. What do you think about that? Yeah, what do our guests think?

Eric 43:22

Like, thinking about both of your articles. What do you hope would change when we’re thinking about medical training? Louise, I’m going to start off with you.

Louise 43:32

I guess I would go back to my list of, you know, find out where the person is on the menu of options and recognize that that will change with age and with experiences, you know, so you can’t have a 30 item list, but you could have a list from I never want to go to the hospital, even if I die at home, to I want to be resuscitated and or intubated.

Eric 43:58

But how much of this was a problem of not having the right list versus not really understanding what the goals were, what the values were with your mom, and then thinking about, okay, which of these interventions is actually going to achieve what’s important to her.

Louise 44:16

I totally agree with you. It’s about goals and values. But I think given the EMR and incoming AI and where the system is now, hopefully having a list instead of just DNR, DNI would be something they would actually do. And where the, you know, the cursor fell on that list would then prompt discussions of goals. But I think what people want is data points, and we’re talking about conversations until conversations are respected, documented, paid for. Right. Everybody’s going to get intubated because the hospital actually makes a whole lot more money if you keep that person alive and intubate them.

Eric 44:59

I truly feel like that case would be, your mom’s case would be different if there was just a couple sentences describing what that discussion was like in the. I think that would have been a framing and if it was easily available for everybody to see. Bill, your magic wand, what are you going to use it on?

Bill 45:17

Well, Louise touched on one, which I’ve been a big fan of, and I think anyone doing ICU training should spend some time in a long term care facility to begin to see the benefits of their work. You know, I do think, you know, one of the things you have to realize, as she said, yes, we do have wonderful successes, and they come back to the birthday parties and everything else, but we don’t see the ones who either don’t make it or even worse, live for a protracted period of time in a very bad situation. The other one, and the other one I’ve struggled with is, how do we bring back humanity to medicine? And one of my thoughts, I mean, if I really look back on really who made me, it was my mentors. It was Edmund Pellegrino, David Tomasma, Al Johnson. Gene Stolen.

The stolenberger at University of Tennessee discovered the link between rheumatic fever and heart disease. You know, those types of people, the people who I would sit down with and share these experiences with and even a resident in the middle of the night when you’re making these decisions. But I do find among our house staff, the time for reflection is not there. And in fact, after a complicated ethics issue, we will oftentimes go in and try and debrief them. And it bothers me how the nurses are there, the physical therapists are there, some of the social workers are there. Occasionally an internal show up, but they’re too busy. They’re too busy.

Eric 46:49

Yeah.

Alex 46:50

Yeah.

Eric 46:50

Well, we could keep on talking. I want to be respectful of time. We’re at the top of the hour, but maybe we can get a little bit more of guy Clark.

Alex 46:58

Alex Yep, the cape.

Speaker 5 47:00

Now he’s all grown up with a flour sack cape tied all around his dreams, and he’s full of piss and vinegar. He’s busting at the seams. So he licked his finger and checked the wind. It’s gonna be do or die. He wasn’t scared of nothing, boys.

Alex 47:23

He was pretty sure he could fly.

Speaker 5 47:26

He’s one of those who knows that life is just a leap of faith. Spread your arms and hold your breath and always trust your keep.

Eric 47:39

Thank you, Louise Bill, thanks for joining us in the podcast, and thanks for writing those articles. Again, we’ll have links to those articles on our show notes. I highly encourage people to think about them and read them. There’s no right or wrong answers here. It’s just that reflection which was Bill was talking about. The end bill Louise, thanks again.

Bill 47:56

Thank you.

Eric 47:57

And to all of our listeners, thank you for your continued support.

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