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The Clinical Excellent Podcast, sponsored by the Bucksbaum Institute for Clinical Excellence is a biweekly podcast hosted by Drs. Adam Cifu and Matthew Sorrentino. The podcast has three formats: discussions between doctors and patients, discussions with authors of research pertinent to improving clinical care and the doctor-patient relationship and discussions with physicians about challenges in the doctor-patient relationship or in the life of a physician.
[00:00:00] Dr. Cifu: On today's episode of The Clinical Excellence Podcast, we have Dr. Micah Prochaska talking about clinical ethics at the end of life.
[00:00:12] Dr. Prochaska: It's just impossible to ask this lady: in a decade based on a, you know, uncertain progression of dementia and all the family events that could potentially happen to your family and their lives, like, how do you want to live out those last days or months? You know, it brings this idea of relational autonomy even more to the table.
[00:00:33] Dr. Cifu: We're back with another episode of The Clinical Excellence Podcast, sponsored by the Bucksbaum Institute. On this podcast, we speak to patients and doctors about all aspects of excellence in clinical medicine. I'm Adam Cifu, and today I'm joined by Dr. Micah Prochaska. Dr. Prochaska is an assistant professor of medicine and clinical investigator at the University of Chicago. Micah studies hospitalized patients with anemia and is also a co-investigator of the University of Chicago Hospitalist Project Research Infrastructure, the University of Chicago Translational Medicine Program, known as CTMP, and the NIA-funded CHARISMA program. CHARISMA, for those not in the know, stands for Cultivating Health and Aging Researchers by Integrating Science, Medicine, and Aging. Micah is also an associate director of the MacLean Center for Clinical and Medical Ethics and the course director of Methods in Inquiry, a course for first-year medical students at the Pritzker School of Medicine, a course that I am deeply indebted to Micah for taking over from me.
Micah, thanks so much for taking your time away from that incredible list of things to talk to me today.
[00:01:54] Dr. Prochaska: Thanks, Adam. I'm very happy to be here. I'm very happy to do this with you and for the Bucksbaum Institute. And I am indebted to you for inheriting the course and all the good work that you put into it before I took it over.
[00:02:05] Dr. Cifu: So, Micah, your clinical life is as a hospitalist and a clinical ethicist. What initially got you sort of interested in clinical medical ethics? How did you come to that?
[00:02:14] Dr. Prochaska: Yeah, so I sort of think of it as almost a quintessential U of C story. So it started when I was an undergrad here. Wow. And I was a history and philosophy of science major. And at that time I was studying religion and faith and spirituality in medicine, and really more from an anthropological standpoint, but I had some friends who were HIPS majors who were studying medical ethics and they said, "You know, you really should come to some of these MacLean Center case conferences. They discuss ethical issues that have arisen in the course of care of patients in the hospital." So I came and I didn't really know much about the MacLean Center. I didn't really know who many of these people were, but it turns out they were luminaries in the field. So Mark Siegler, John Lantos, I think Leon Kass would still show up at that time.
Lainie Ross, of course, was there, Father John Paris. And I would watch these people in sort of true U of C fashion, I mean, vigorous, passionate debate. And then they would walk out and say, "I'll see you at dinner Saturday night." So I was totally enthralled by the sort of multidisciplinary or interdisciplinary nature of this conference, and the willingness of these sort of intellectual titans to go to bat and to think through really difficult complex issues in the context of patient care with a sort of bent in an orientation towards making sure that patients got good care.
[00:03:32] Dr. Cifu: That is something that I've always respected about MacLean and I think about clinical medical ethics in general is that it's a lot of, you know, sort of in-the-clouds issues, but dealt with in a really pragmatic way that like, look, at the end of the day, we got to make a decision. We got to make a rational recommendation to a patient, to a patient's family, to a clinical team. And so it sometimes takes some of the stuff that bugged me in, you know, undergraduate philosophy courses and makes it more utilitarian.
[00:04:04] Dr. Prochaska: Yeah, and I mean if you listen to Mark Siegler talk about the history of the MacLean Center, and it's a little bit off-topic for this podcast, but he'll talk about how it was so theoretical, bioethics. And he brought it to the bedside and so that is the tradition of the MacLean Center and the tradition that I come out of so when I'm running the consult service and we have all 30 faculty and, you know, 20-30 fellows, we do get deep into the philosophy and theoretical ideas and there's arguments but at the end of the day, I try to push the group to say like, doctors called an ethics consult because they weren't sure what to do. And we have got to be in service to that and tell them not necessarily that there's a right or a wrong answer, ethical or unethical, but say, "These are the range of options you have. And here's the different competing ethical tensions in choosing different pathways." And like, we've got to stay focused on helping the provider or the patient and the family and then the whole unit that calls the consult.
[00:04:58] Dr. Cifu: So you don't think that the teams want like a 10-page back-and-forth that doesn't end with an answer?
[00:05:03] Dr. Prochaska: Yeah. We occasionally write those and I'll find out later, and I think, "Oh, man, like, you know, we're never getting another call from these people again."
[00:05:10] Dr. Cifu: So you mentioned, you know, time on the ethics consult service. What are the questions that you guys end up engaging on most?
[00:05:21] Dr. Prochaska: The most common one is surrogate decision-making. So, you know, and that takes various forms. Who's the decision-maker, conflicts between decision-makers, conflicts between a known surrogate and a medical team. So that's the most common. Probably the second most common is decisional capacity. So does this patient have decisional capacity?
And then very closely aligned with decisional capacity is this idea of treatment over objection. So, you know, if someone doesn't have capacity, but they're sort of with it enough to express some preference and they're saying, "We don't want this," how do we give them the treatment that we're all saying they need?
We get some on futility, some on moral distress, some on informed consent. We actually get a fair dose of like just really wild consults that, you know, sort of... They would be sort of headlines of newspapers. And those are always interesting and fun but you know, as a hospitalist, there's this idea of micro ethics. And that's what I'm most interested in. It's like the routine things we do day-to-day have sort of profound ethical implications. And so, you know, you and I have spent a lot of time talking about data and clinical research data. And you know, even how we say, "Well, so the trial data says X or the trial data says Y." How we frame that data and how we frame choices actually sort of has these profound ethical implications because the patient sort of perceives it and understands it in a certain way based on how we frame it.
That's a long way of saying we get a variety of consults. Some of them are fantastical and others are very routine, but I find the routine ones to be often the most interesting.
[00:07:00] Dr. Cifu: I was going to make a comment on how it sounds interesting because some of the topics you cover have both, you know, not only an ethical grounding, but you know, legal grounding and there must be tension sometimes, but I think I'm actually more interested in when you talk about the micro ethics because I have sometimes, you know, thought about a practice session or even a visit with patients, right? And it's probably true in all of our lives, but I think about it most, you know, in the office and that often there are multiple decisions made, right? Or multiple negotiations that go on but you don't even really think about the importance of some of those, but you could almost say, "You know what? Just once, I'm going to blow up a 20-minute visit and I'm going to write an entire book about like every interaction, every decision." It could be amazing.
[00:07:46] Dr. Prochaska: Yeah. And these all have some ethical angle. I mean, we don't have to make up ethical issues in some of them, but they have an ethical dimension. And, you know, I think the way we're taught medical ethics is, well, there's four big principles, autonomy, beneficence, non-maleficence, you know, justice. And so we sort of say like, "Well, at the bedside or in the clinic, when I'm deciding whether I start an antihypertensive," that's so far from these big bins. And, you know, going back to where we were a few minutes ago, I mean, you know, Mark Siegler's whole point was like, well, listen, these things actually have ethical implications and we don't have to go theoretical and big to get to the doctor-patient relationship and the ethical implications of that, to think about ethics. We can think about these basic, you know, common, routine decisions and everyday encounters in an ethical framework.
[00:08:36] Dr. Cifu: I asked you here one, because we've been doing this podcast for a couple of years and I can't believe we haven't talked about things on the podcast because I feel like some of our conversations in the hallway would have been good podcasts, but I also had this experience lately, which kind of shifted my thinking a little bit about end of life care and I just wanted to kind of get your sense of it, you know, on tape so I can use it against you.
So let me kind of give you a case and this was fairly routine. I saw an elderly woman long-term patient of mine specifically to discuss end-of-life care. It was one of those rare visits where it wasn't like, "Oh, let's quickly discuss end-of-life care in the last 90 seconds of this visit." Her and her family decided they would come in to have a conversation about this. She brought a dear friend and her son. Her son is her healthcare power of attorney. She's actually very healthy but is in the early stages of dementia, which I think sort of pushed this to all happen. And what was interesting about the visit was that she was in a very different place about her decision-making than her friend or her son. And so when she pulled out the, you know, Illinois Statutory Power of Attorney for Health form, she checked the box, and I'm going to read this because it was so true to what she thought. So what it says on the form is, "Staying alive is more important to me, no matter how sick I am, how much I am suffering, the cost of the procedures, or how unlikely my chances for recovery are. I want my life to be prolonged to the greatest extent possible in accordance with reasonable medical standards."
And although that sounds, you know, extreme, it was very much in line with sort of ideas that she had expressed over the course of her life with me. And I know her ideas when she was caring for friends and relatives. Her supports, her friend, her son, who would be her caregivers and decision-makers, you know, if her dementia progressed and she needed people to make decisions for her were very much on the side of like, "Listen, you know, if you're terribly demented and need help with feeding and toileting and then you get pneumonia, seems like we should just let you pass," but they sort of obviously bowed to the patient's wishes. But I left thinking like, wow, we talk a lot about patient autonomy. Patient autonomy is very important but here's a place where these decisions probably have the most meaning for the loved ones and caregivers. And it felt strange to leave them out of the discussion.
[00:11:12] Dr. Prochaska: Yeah, to disregard them. So, I mean, I think this is like such a rich encounter and, you know, the sort of classic teaching here is that patients and their wishes take precedence over anything.
And when we have decision-making capacity, particularly with an immediate decision in front of us or a series of choices, that makes a lot of sense. And that's rooted in this idea that we ourselves are best able to make the choices that sort of maximize our happiness or, you know, allow us to pursue the worthwhile life that we perceive. So this is, you know, John Stuart Mill's "On Liberty." It starts to break down a little bit, though, when we think about future states and future decisions.
[00:11:54] Dr. Cifu: Right, right, right.
[00:11:55] Dr. Prochaska: And, you know, probably the crux of it is we're sort of talking about a hypothetical future state or a series of potential hypothetical future states of which none of us can anticipate.
And, you know, again, sort of then the classical teaching becomes, well, whatever a patient says about their future hypothetical state, so that's known wishes. And if they've never said it, we use substituted judgment. And that's this idea that, well, you know, maybe you never told me what specifically you wanted, but I know... I think I know you well enough to know how you would choose in this instance.
And then the last sort of standard we use is what's called best interest, where we say, well, gosh, we don't even know what you would choose, so we're going to act in your best interest knowing who you are. And we can get into it if we want, but each of those is actually very problematic. It's really hard to do this.
It's hard to do it for, you know... Surrogates just have a very difficult time doing these decisions. And even patients, when we say, "Well, I'm certain that this is what I want." Our choices change over time. What we think we want for dinner changes, what we... You know, and it's influenced by a whole bunch of factors. And so it's really difficult to know, like, how am I going to think about this?
I mean, you can imagine a scenario where we say, well, to your patient, "Well, what if you lived so long that all of your family were already deceased and no one who was any of your descendants even knew who you were? Do you still want to be maintained?" I mean, we could come up with a series of scenarios.
And so patients aren't able to come up with that. And we're not able to even answer these questions, but the model is set up to say, well, that's how we're going to choose.
[00:13:34] Dr. Cifu: Yeah.
[00:13:35] Dr. Prochaska: So, I think when you mentioned this to me, I told you, so Bill Meadow was just like, for those that don't know him, a neonatologist here who was just fantastic. I mean, an unbelievable clinician, but also just an unbelievable intellectual titan, and a contrarian. And so he was willing to push the bounds and as a neonatologist, he always had the family member as an entity in the moral calculus.
So he never looked at these babies and said, "Well, I am not worried about what happens to the family member after the baby passes away, or in the midst of making a very difficult decision for a baby, I've got to deal with the parents." And that's very different than, you know, the model you and I work in is with adults where we say, well, adult autonomy matters.
So I really learned from Bill to say like, listen, you know, from the doctor-patient relationship standpoint, you have got to deal with the family because they're the ones who are going to be left over and...
[00:14:33] Dr. Cifu: And I'll add to that. Let me just cut in. I think that's so important. And when you first talked to me about kind of how Dr. Meadow has looked at this, I realize that so many of the patients who I take care of, their relationship with medicine has been so influenced by interactions that relatives have had with medicine in the past. And I've had patients who, when I talked to them about, you know, what sort of treatment they want, they immediately start telling the story, you know, about a brother or an uncle who had some terrible experience.
And I do realize that these decisions, actually... There are ripples that kind of go out sometimes for generations, right?
[00:15:15] Dr. Prochaska: Yeah, yeah, exactly. And so, you know, if the doctor-patient window is saying, you know, family members matter, the sort of ethical lens for examining that exact same idea is this idea of relational autonomy.
And so instead of individual autonomy, like recognizing that our autonomy and our autonomous choices and decisions are influenced by the people around us, by the people that matter to us. And so that sort of expands the scope of the circle of people that you're concerned with. And that's what makes this, I think, so interesting.
Now, going back to where we started with this whole conversation, the question becomes, well, what do you do? You know, this particular case is interesting because like, maybe she's got a little bit of dementia, you know. It always is very difficult to say, well, you know, do you have decision-making, you know, ability for this decision and not that decision? It's hard to test. That can fluctuate. And more importantly, it sounds like this was a long-held belief and so, you know, the challenge becomes unpacking the belief, unpacking why the family members disagree and the friends disagree, and then coming to a consensus. And that's the challenge.
[00:16:25] Dr. Cifu: Right. And with the recognition that, you know, we're having this conversation now, the action that stems from this, you know, maybe a decade in the future.
And we'll be, you know, in a completely different setting, maybe with a different doctor. You know, I might be on a beach somewhere by then. So actually, despite everything you said, I sort of looked at this as more of an intellectual challenge than a practical one because it was so far off, which maybe makes it a little bit easier and more realistic.
[00:16:58] Dr. Prochaska: Yeah, I mean, I think it's realistic. I mean, I'm not even sure that the intellectual versus practical distinction needs to happen. I think the push is to, well, if we just get to people early enough and ask them their preferences, but I think the fact that this is likely to happen in a decade, even more confirms that it's just impossible to ask this lady: in a decade, based on a, you know, uncertain progression of dementia and all the family events that could potentially happen to your family and their lives, like, how do you want to live out those last days or months? You know, it brings this idea of relational autonomy even more to the table.
[00:17:37] Dr. Cifu: Absolutely. So let me ask you if this is a reasonable way. When I think about when things work perfectly, with the complete understanding that it would be a fairy tale to say that this could always happen, but when people have one or two people in their lives who they talk about these things to, you know, not just once, but sort of over time who really, you know, love the person, have no other interests interfering and truly know what inside... You know, what they were like and what sort of decisions they make.
When I'm the physician, I feel like, boy, when those people step up and are willing to say, this is a hard decision, but this is really what's right, that sort of works perfectly.
[00:18:24] Dr. Prochaska: I completely agree. I mean, it's not necessarily the dominant ethical view, a view of ethicists to say like, "Listen, the advanced directives and the living wills are..." You know, but I sort of look at them and I'm like, I don't know when they were signed and when this discussion happened, but when a family comes forward and is like, "Listen, doctor, help us understand what our options are here, and we'll tell you who this person is."
There's actually a lovely paper by Dan Sulmasy, our former colleague here at U of C, who's now at Georgetown, and his wife, Lois. And it was 'Substituted Judgments and Best Interests' I think is the title, and it was in JAMA maybe a decade ago. And Dan tries to take this decision-making out of the guessing what would a patient want. And he sort of says like, the doctor's job is to find the family members that know the patient. And then extract all of these values about the patient. Tell me about your mom. What mattered to her? What life did she live? Like, what did she enjoy? What were the things? And then sort of repeat that, like, okay, I'm hearing this is what's important to your mom or your dad or your loved one whoever's your loved one. I was like, okay, here's our medical options. Can we think about all these things that you say are important to them and who they were. And then how do we fit that in with the medical options that I have training and expertise in offering, and some insight into how each of those pathways is going to unfold.
And so I've always found that to just be... I think it's a highly cited paper, but it probably should be even more highly cited because it sort of changes the paradigm for thinking about how we make decisions and less focused on can we try to record all the things that matter to you now, such that in a decade, we just, you know, cross our fingers and hope that all of it still applies and more say like, we don't know when these decisions are going to have to be made, but we're going to talk to your loved ones and we're going to try and do the best job to represent who you are and your authentic choices and your authentic self.
[00:20:22] Dr. Cifu: Dan Sulmasy's favorite paper for me was 'A Piece of My Mind' that he wrote in JAMA about an absolutely perfect medical visit, and it turned out to be about his cat. And it was sort of both complimenting the veterinarians and throwing the physicians under the bus in a very articulate way.
[00:20:42] Dr. Prochaska: You know, so in later years when I joined the MacLean Center as a faculty member, Bill Meadow, who I've mentioned earlier, and Dan came from really different worlds. And Dan was very rigid with these are the ethical principles we abide by. And Bill is the contrarian was like, "Yeah, yeah, yeah. Take your ethical principles elsewhere, but I've got patients care for." And the two of them would have these unbelievable clashes. And you know, I learned so much from each of them, and through watching these to argue and debate some of these issues,
[00:21:12] Dr. Cifu: That's great. One thing I wanted to throw out there just as a very quick point. I've read some interesting studies about how people grade quality of life, and that we as humans, because we're sort of amazing, we always estimate our quality of life better when we're living it than we would if we're thinking about it in the future, right?
So if you take someone and you say, you know, "What grade you'd give to your quality of life if you were confined to a wheelchair?" They'd be like, "Oh, it's terrible. I'd never want to live like that." And you ask that person when they're in a wheelchair or, you know, an equivalent and they're sort of like, "Yeah, it's fine." And it gets to this and the difficulty of like, how am I going to think 10 years in advance, think about what my life is like, think about what I'd want at that point.
[00:22:01] Dr. Prochaska: Yeah. Yeah. I mean, I think to your point about the quality of life is you might know the data better than me, I think it's true for both doctors and patients. Like doctors say, "Oof, I don't know if that's great." And then when they look at patients, patients are like, "Not so bad." And patients themselves look at it and say they think it's not so great and they get there.
Yeah, I mean, we don't know what our future selves are going to find valuable or our ability to even think through like what that future itself means. I mean, many patients with dementia end up, you know, able to converse and have lived lives and you sort of say, "You know, if that were to become me, it would not be the person that I am now, but gosh, I still have some moral value and some moral weight." And then the question is like, well, how much do my preferences, my future preferences in that future state weigh against my preferences in this state? And it's impossible to answer that question.
[00:22:53] Dr. Cifu: You might very well be happier then.
[00:22:55] Dr. Prochaska: Very happy. Right. Exactly.
[00:22:58] Dr. Cifu: Well, Mike, again, thank you for taking the time to sit and talk to me today. This is really a pleasure.
Thanks for joining us for this episode of The Clinical Excellence Podcast. We are sponsored by the Bucksbaum Institute for Clinical Excellence at the University of Chicago. Please feel free to reach out to us with your thoughts and ideas via the Bucksbaum Institute webpage or on Twitter.
The music for The Clinical Excellence Podcast is courtesy of Dr. Maylyn Martinez.