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We’ve talked about Brain Death before with Robert (Bob) Troug and guest-host Liz Dzeng, and in many ways today’s podcast is a follow up to that episode (apologies Bob for mispronouncing your last name on today’s podcast!).

Why does this issue keep coming up?  Why is it unresolved?  Today we put these questions to Winston Chiong, a neurologist and bioethicist, and Sean Aas, a philosopher and bioethicist.  We talk about many reasons and ways forward on this podcast, including:

  • The ways in which advancing technology continually forces us to re-evaluate what it means to be dead – from the ability of cells/organs to revive, to a future in which organs can be grown, to uploading our consciousness to an AI.  (I briefly mention the Bobiverse series by Denise Taylor – a science fiction series about an uploaded consciousness that confronts the reader with a  re-evaluation of what it means to be human, or deserving of moral standing).
  • The moral questions at stake vs the biologic questions (and links between them)
  • The pressures the organ donation placers on this issue, and questioning if this is the dominant consideration (as Winston notes, organ donation was not central to the Jahi McMath story)
  • What we argue about when we argue about death – the title of a great recent paper from Sean – which argues that “we must define death in moralized terms, as the loss of a significant sort of moral standing,” – noting that those why are “dead” have something to gain – the ability to donate their organs to others.
  • Winston’s paper on the “fuzziness” around all definitions of brain death, titled, Brain Death without Definitions.

As we joke about at the start – talking with philosophers and bioethicists, you almost always get a response along the lines of, “well that’s a good question, but let’s examine a deeper more fundamental question.”  Today is no different. And the process of identifying the right questions to ask is absolutely the best place to start.  

Eventually, of course, everything must cease.  

@AlexSmithMD

** NOTE: To claim CME credit for this episode, click here **

 


Transcript

Eric 00:09

Welcome to the GeriPal podcast. This is Eric Widera.

Alex 00:12

This is Alex Smith.

Eric 00:12

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

Alex 00:14

Today we are delighted to welcome long time friend Winston Chiong, neurologist and bioethicist professor at UCSF in the Department of Neurology and director of UCSF Bioethics. Winston, welcome to the GeriPal podcast.

Winston 00:27

Thanks so much for having me.

Alex 00:29

And we’re delighted to welcome Sean Aas, who is a philosopher and bioethicist and senior research scholar at the Kennedy Institute of Ethics and associate professor in the department of Philosophy in Georgetown. Sean, welcome to the GeriPal podcast.

Sean 00:43

Thanks for having me.

Eric 00:44

And Alex, we’ve recently done a podcast on what happens after you die.

Eric 00:52

recently with an Undertaker. We’ve done podcasts on dying. We’ve only done one other podcast on just death. What is death?

Alex 01:01

That was with Bob truck.

Eric 01:02

That was with Bob Truog. That was great. We’ll have a link to that in our show notes. We’re gonna double up on that subject.

Alex 01:07

We haven’t figured it out.

Eric 01:08

No, I haven’t figured it out yet. I’m still trying to figure out what death is and thinking about kind of what does it mean going forward in the future, too. But before we jump into that topic, we always have a song request. Sean, I think you have the song request for Alex.

Sean 01:21

I’d love to hear the song Cease by the band Bad Religion.

Eric 01:25

And why did you choose Bad Religion?

Sean 01:27

Bad Religion is this interesting punk band, originally from the eighties, that has this very kind of philosophical, lyrical content in their songs and got me interested in philosophy in the first place, really listening to them as a teenager. So this song is a song of theirs. It’s about something I’m philosophically interested in. It fits.

Eric 01:47

Let’s hear it, Alex.

Alex 01:48

All right.

Alex 01:57

(singing)

Sean 02:45

Well done. Well done. Thank you.

Alex 02:49

Everything must cease – great. That’s a fun one.

Eric 02:52

Thanks, Sean. I see the connection between the topic and the song. So, Sean, is there anything besides bad religion that got you interested in going down this pathway about thinking about kind of how we define death? And just to let our listeners know, is that Sean just published a great paper. What journal was it in again?

Sean 03:14

The Journal of Medicine and Philosophy.

Eric 03:16

Journal of Medicine and Philosophy. About the topic that we’re going to be talking about. We’ll have links to that in our show notes. So, Sean, what got you interested in this?

Sean 03:24

Yeah, so I’m a philosopher, and in particular, a bioethicist and philosopher of medicine, and my kind of niche within that, I guess I have a couple of overlapping niches, but I’m especially interested in how to define some of the kind of central concepts in medicine or whether and in what way we might think about defining them. So I’m interested, for instance, in the boundaries of the human body. What counts as being healthy or unhealthy. It means for something to be a disease.

Right. So these are kind of classic questions of what people sometimes call philosophy of medicine as a kind of overlapping subject matter with bioethics. So that comes together with a longstanding interest in a tradition, in political philosophy, you know, the philosophy of how we should justify laws and state and, you know, governments, which really emphasizes the importance in a pluralistic society of having ways of talking about the things that matter to our common life, which are justifiable to people from a wide range of different. Different points of view, different religious and philosophical points of view.

So some of your listeners, if they took some philosophy classes, may have read the work of the philosopher John Rawls. This way of coping with pluralism is a tradition that he really extended and pioneered and was deeply influential. And a lot of my work has kind of been that vein.

Eric 04:38

And can I ask you, when did you. I love these topics, too, because even how do we define what is a diagnosis? It’s coming up very much right now. We’ve had plenty of talks about this with Alzheimer’s.

Alex 04:49

Amyloid.

Eric 04:50

Okay, so I love this for you. Like, when was the first time you thought that death, because it’s like you walk down a path in the woods and you see a dead bird like that looks dead, you don’t think twice about it. When did you start thinking twice about death?

Sean 05:10

Well, I mean, there’s the kind of thinking twice about death you do, you know when you wake up at 03:00 a.m. in the morning? I had a dream when I was six where I died, and it wasn’t realistic because I was, you know, being dead was just kind of like having my eyes closed and, you know, I was scared of the dark. So. But, you know, it is the kind of thing, the kind of kid who becomes a philosopher is the kind of kid who maybe thinks a little bit about.

Eric 05:32

Is that true, Winston?

Sean 05:33

Maybe morbidly.

Winston 05:36

I think there’s a notion in philosophy, actually, that ordinary people have concepts that they work with that they just take for granted. And there’s, like, the one kid who’s stuck in the back, like, okay, two plus two equals four. I get it. But what is a number? Like, what are these abstract objects that we have knowledge of independently of expert? Right. And, like, that’s exactly. So all the other kids are, like, just going through. They get it. They’re working with these. And then, you know, it’s like.

Eric 05:59

Did you ask you what two plus two is? Well, before I answer that, I have to think, can we take a step back?

Winston 06:06

What is it?

Sean 06:07

Maybe we should take a step back.

Winston 06:09

Yeah.

Eric 06:11

Winston, how about for you? When did you. You’ve written. We’ll have another link to your paper on this topic. When did you get interested in this?

Winston 06:19

Yeah, well, this was quite a while ago. So this is a fun conversation because it takes me back to some questions that I haven’t really been engaging with that deeply for a while. But I was a sort of combined medicine and philosophy grad student that kind of did them mixed up together and became interested in brain death. Knowing I was interested in neurology and had opportunities to observe brain death determination in the hospital.

And this was becoming a very controversial topic at the time. And I think a little similarly to what Sean was saying. Just started seeing some correspondences between work I was reading in certain areas, in this case, and the philosophy of biology and the philosophy of language that I thought were relevant to these debates that were going on among neurologists and other clinicians. And so I was sort of excited, I think, as somebody who was doing this split training to see this connection between this really abstract work I was doing in my courses.

And knowing that there were even then and continuing now these really active controversies among neurologists. So Alan Schumann and Jim Burnett being two very prominent ones in neurology and both of whom I actually got to meet around then and got to talk with.

Sean 07:41

So picking up a little bit on that, Winston, to give my kind of real answer. Right, my answer that brings us a little bit closer to the present than my childhood. I was reading that same literature and in particular, reading the two presidential commission or council reports that were commissioned. The first one, which was very influential on the writing of the law that was released in 1981.

And then another, which was released under the Bush administration by a council with a different sort of philosophical Benton worldview which still managed to come to the same conclusion in support of a brain based definition, death. And in reading those reports in that literature, it seemed to me that what was going on is that public policy was being made by reference to very deep philosophical disputes about issues like, what does it mean for something to be alive? What does it mean for a person to leave the world? Right. What happens next? What kind of thing marks the transition from this world and the next world, if there is one? And the concern from the political philosophy tradition about pluralism is that those are paradigm things that we should try to avoid in politics.

We should try to make decisions based on things that we can all agree about, or at least all agree are relevant or important, and not have to go to things which we can never expect others to agree with us about, like what it means to be alive. So that kind of, that same literature spurred my thinking about it in the line of thinking that led to the paper.

Alex 09:09

And I know we’re going to get into a deeper dive into what you proposed, Sean, and hear Winston’s thoughts about it. Before we do, I just want to acknowledge for our listeners, who are mostly clinicians, like who are the interested parties here? And I think maybe we could list them all. Patients families want to know whether their loved one has died. That’s one key interested party.

Doctors want to know whether the patient has died. And one of the principal driving factors behind doctors wanting to know whether the patient has died, I think we need to acknowledge, is harvesting organs for transplant. And this comes up in both of your papers. You know, when is it okay to harvest organs from a patient? And if that criteria.

Eric 10:00

Harvest, harvest. Is that a.

Alex 10:03

Is that the correct word?

Sean 10:05

I prefer to say when should we let someone give their vital organs to someone else?

Alex 10:09

That sounds better than harvest. Yeah.

Sean 10:10

Because this is always voluntary in our system. Right. It’s not even opt out, it’s opt in. Right. So, you know, somebody is giving. Right. They’re not saying, I give it to you right now because they’re out of it. Right. But it is a decision they’ve made at some point.

Winston 10:23

Some people use the term procurement.

Eric 10:26

Okay, that sounds better than harvest on a spectrum.

Alex 10:31

And just to be clear, like, those are the interested, the most interested parties, right.

Eric 10:35

Are there others, the people who need the organs? Insurance companies. Healthcare provide. Healthcare companies. Icus for beds.

Winston 10:46

Yeah. I would say that there’s a lot of clinicians in icus for whom this whole topic is an area of a lot of moral distress. And one would be when care is continuing a case where people believe that the patients died, or oftentimes, this is also a source of controversy between families and clinicians. And so this affects the doctors on the team, but it actually affects a lot of the other people on the ICU team besides the doctors a lot more. Right.

They’re often the ones who are most directly in touch with a grieving family or may have their own concerns about the care that’s being provided and the worth or value of what they’re showing up and doing every day. So I think that we’ve talked a lot more about things like moral distress in the ICU, and I would say that from a lot of different angles, the diagnosis of death in patients, when that diagnosis comes earlier than some people think it should, or when that diagnosis comes later than some people think it should, can be an occasion for a lot of moral distress among the whole ICU team.

Alex 11:53

Great. Thank you.

Eric 11:54

And also lots of other things we don’t even think about too revolve around this life insurance and whether or not how much you can sue your doctor or healthcare providers for depends if the patient’s still alive or if they’re dead. So there may be caps if the patient died versus no caps. And what you can sue for if they’re still alive.

Sean 12:16

Yeah, I mean, my understanding is that there were some liability issues in the Jahi McMath case, which there were parties who may have been less liable in certain ways if she was dead at a certain point than if she wasn’t or more.

Eric 12:29

Yeah. So just for our listeners, Jahi McMath, who was a young, I forgot, like 1314 year old, I forgot how young, had tonsil surgery, had devastating outcome, basically declared brain dead afterwards in the state of California, death certificate filled out. So legally dead in California, family moved to New Jersey, where she was kind of alive despite having a death certificate for another four years, and then died four years later after being actually home on a ventilator for a while, too, we talked more about that with the Bob Truog podcast. So if you want to listen to more about that, feel free to listen to that podcast as well. But it did bring up some interesting questions, like the lawsuit would be significantly, much more money if she was still alive versus dead, but she actually was technically dead in the state of California because she had death certificate despite being alive, which was very confusing, which brings down this question. This is all very confusing, and potentially it’s just going to get more confusing in the future as our technologies continue to change and improve. What do you think about that, Winston?

Winston 13:36

Yeah, I think that it’s funny because we’re talking a lot about brain death, but there’s this traditional circulatory, respiratory, or cardiopulmonary criteria of death. They coexist in the uniform Declaration of Death act. In the state of California, in most states, you can be declared dead either on the basis of the permanent or irreversible, depending on who you’re talking to, loss of brain function or the loss of circulation and breathing. But we know that we have technologies like ECMO. You could hook somebody up to an ECMO machine and keep the blood circulating and keep oxygenating the blood.

Eric 14:12

And they have no pulse. They don’t even need lungs at that point. They don’t need a heart. They don’t need lungs.

Winston 14:17

Right. So the kind of technological bind we’re talking about that first became recognized in the sixties or so with ventilators, the kinds of technologies that we have to sustain different kinds of bodily function. So if you got somebody hooked up to an ECMO machine to dialysis. So there’s a lot of things that we had in the past taken as relatively bedrock. And I think we’re finding that our technologies keep getting, well, from a certain point of view, better and better. At least our technical abilities continue to expand. But this raises lots of questions now for when somebody can be declared dead by the non neurologic criteria. So the good old cardiopulmonary criteria that everyone thought like, oh, this is like bedrock, whatever. What does that even mean?

Eric 15:12

They don’t have a pulse. They’re not breathing. They’re dead. I remember as a resident, I remember trying to declare somebody. So I was called out by the nurses. This patient died. I walked in the room, patient looked dead, not breathing. Listen, sitting there for, like a minute, but listened to the heart for, like, five minutes. This person wasn’t breathing at all. Still had this exceptionally slow heart rate, but still, like, five minutes later, I actually walked out of the room, then came back a couple minutes later, listened again, and they were.

The heart was still beating, but no breathing. It was the first time I really thought, like, and, man, this idea, this cardiopulmonary death, this biological death based on this doesn’t make a whole lot of sense, because even after they stop breathing, their heart stops beating. Parts of their bodies are still working for a period of time. I think, Winston, in your article, you even said for probably brief periods of time, they’re still conscious. Even after their heart stops beating, white cells are still alive for potentially days later. So this idea that the cardiopulmonary death is clear cut, maybe like, is it like two plus two? Sean?

Winston 16:21

We transplant hearts and lungs out of people who are declared dead on the basis of lost cardiopulmonary function. Right. So these different tissues and organs, again, with more technology and so forth, there’s certain things that get conceptually really strange about all this.

Sean 16:38

Right.

Winston 16:39

And brain death is part of it. But I think we’re partly telling a story about how we have these increasing technological abilities to push beyond what we would have previously seen as very clear limits. And then it makes it very difficult to know how to apply these notions that we have kind of grown up and trained in.

Alex 16:59

Yeah, I know we want to get to Sean, who’s going to help us get out of this in a moment. And just not to put too fine a point to it, articles in New England Journal this week about people in persistent vegetative state who were able to accomplish some sort of tasks. Winston could probably tell us what they were, if you want to go that direction, although we probably have another podcast about this specifically. And so, you know, like, the history of what is death has been reactionary. As our technology has advanced and advanced, advanced, we keep shifting our definition. Sean, are we talking about the right things when we’re talking about death?

Sean 17:40

Yeah. So, I mean, one thing that I take from Winston’s great paper, which I consulted in writing mine and cited, although maybe not as frequently as I should have, is this idea that a lot of these terms, and I think this is a philosophical perspective that Winston and I are both sympathetic to. A lot of these central terms, death, other ones I was talking about life, body disease, they don’t come with perfectly precise meanings. They’re used in different ways. And there are different kinds of clusters of concepts, definitions that guide those different kinds of usages.

Sometimes when we talk about death, what we have in mind, when we talk about life and death, what we have in mind is a concept that applies from at least the smallest bacterium. Viruses are a hard case, as Winston points out, of to a human being and maybe even to things bigger than organisms, like ecosystems or something like that. Right? And this is a kind of biological concept. It’s like there is this thing, right? Life, this other thing. Organism, organisms can have this property of being living or not. And on this way of thinking about death, of talking about death this way, as I would using the term, when we talk about death, we’re trying to figure out for the case we often care most about, namely human beings, where that kind of line in the world is between living human organisms and nonliving human organisms.

And I think that’s the paradigm that’s implicitly guided much of the discussion about this. So what the presidential councils did is they said, we have these really pressing practical issues because of these new technologies that we’ve come up with and started using. Let’s call the philosophers. So the Carter administration called some secular liberal philosophers, the Bush administration called some catholic philosophers. They called different philosophers, but they called the philosophers. Right. And they had them have an argument about these kind of deep philosophical intersections that the concepts of the intersection of philosophy and biology, philosophy of science, and said, what is life? And tell us what that means for human beings. I think that’s how it’s been discussed. And you overwritten my paper. No, I’m not sure that’s the right way to discuss it, but I think that’s been the framework.

Eric 20:02

Let me ask you a question before we go into think about a different framework. Is there a way to biologically define death of, let’s say, an organism, I guess, from an organism perspective, whether a human, a cat, an amoeba? Is there a way to do that, or is that more of a philosophical question?

Sean 20:20

It’s a question at the intersection. So I’m not sure that you could. That an experiment could settle it. Right?

Winston 20:25

Yeah.

Sean 20:26

It’s sort of a question of when you build your whole theory of what life is, right. Of what the difference is between a corpse and a living thing. Right. Or between some chemicals and a living thing on the other side. Right. Some chemicals and some primordial soup. Somewhere there’s some big theory of what that is. And the idea is that biologists construct that theory, and then philosophers and more theoretically minded biologists come along and try and extract some refinements of that, some precipitation of that into a definition of life and death in biological terms.

Alex 20:58

And you could see how the future we’re going to be pushing on this and pushing on this beyond biology as we develop AI’s who are able to capture the ways in which people think and act, behave, maybe feel someday. Is that a continuation of the person that’s deserving of. Well, wow. I don’t want to undercut Sean here. Sean, help us out. How do we get out of here?

Sean 21:23

I love that you brought that up. I wasn’t sure how space age to get here, but one reason to be concerned about that biological paradigm, it’s not the reason that I emphasize in the paper, but since you mentioned it, is that I don’t think I know whether you have to be alive to be conscious. So there are philosophers, science fiction writers, tv shows, movies you may have seen where a person uploads themselves into a computer. Right?

So there’s some procedure by which I think there’s a show called upload, which is all premised on this. Maybe some of your listeners, viewers have come across this in fiction, if not in philosophy. So you might think that you would survive into that digital afterlife that would still be you, and that you could die in it somehow if the program were shut off. Right? And so you’d want, if you wanted to accommodate that kind of thinking, you’d want some idea of death, which isn’t a fundamentally tied to this kind of wet stuff here.

Alex 22:22

Can I just recommend for our listeners the Bobiverse series, terrific science fiction series about this person who’s uploaded to a computer and lives on in the future and helps save the universe.

Eric 22:37

Okay, Winston, you were going to say something?

Winston 22:39

Oh, I was going to say about whether or not these things are scientific questions or philosophical questions. I think what I would say is that these things are often not settled by experiment, but they’re often part of the broader construct or framework that scientists are operating within. And so I think there are a lot of biologists who are actively discussing these definitional questions. One would be, for instance, what is life? What are the boundaries of life? How would we know if we found life on another planet if it didn’t have, like, the chemical specific characteristics of life on earth? Right. So that’s like a question.

And then, you know, that’s a philosophical sounding question, but it actually, like, it turns a lot on our specific understanding of how life works. What are the characteristics of life? Things like that. Or another good example, a paper I recently read was about biologists discussing how should we think about the concept of sex in biology.

Sean 23:37

Right?

Winston 23:38

And so that’s like, that’s something that we take as, like, a biological given. You know, different species have sexes. They apply in different ways. So in some sense, it’s like a conceptual question. It stands a little bit behind, you know, a pretty, you know, like, there’s no one experiment that you could run that would, like, settle this question, but we can talk about how different, like, ways of form, like. Like answering that question better cohere with the science that we have or, you know, make better sense of the scientific findings that we have.

And, you know, so those are, those are things that, you know, it is a little bit blurry in terms of, like, they’re not empirical questions. Like, we could, like, do an experiment to do that with settling. But we could look at, like, all the experimental evidence we have, or, like, what’s our best way of understanding this? Or, like, species would be another example, right? It’s like, what’s a species? Right? So, you know, and again, there are, like, better and worse answers to those questions based upon what we know about how the world is kind of put together. So I think in that way, it’s not just a philosophical question. It’s not just something for people to, like, debate about in, you know, in the armchair, because a lot of it does depend a little bit on, you know, again, what makes the best sense of all of these observations that we’ve accumulated, you know, in these different sciences.

Eric 24:53

Yeah. Really interesting, too, as we think about the future. Imagine you can print organs. You know, I. Yeah, that’s where we.

Alex 25:00

Ended the Bob Traug podcast, right? Yeah. What would. What’s going to happen to the need to declare death at this point, if we can all of a sudden grow organs in the lab, the urgency is much reduced.

Eric 25:11

Well, it’s interesting. So my heart goes bad, I can print out a new heart. Did I die? Cause I got a new heart. No kidneys. Print a new. Am I dead? No brain. What if my brain dies and I print out a new brain and I put that in? Or take Alex’s and put it in my brain.

Alex 25:29

Uh oh. You gotta do the song.

Eric 25:36

But my hands are not piano hands. Did I die? Is Alex still living? Because his brain is in me?

Alex 25:43

Wait, okay, have we gone too far afield, listeners? They’re like, wait, I thought Sean was going to help us out of this. We were going to get away from the biology to the philosophy.

Eric 25:53

I’m in this rabbit hole now, Shaw. Like, what the heck?

Sean 25:59

I could fall you into the rabbit hole.

Sean 26:05

Yeah. The philosopher David Chalmers, who’s written a lot about this idea of uploading, and he talks about the idea of how would you digitize your brain? And he thinks it’s important that you do it bit by bit. So you slowly replace each neuron with some kind of silicon thing, and then there’s no point at which you can say you’ve disappeared, you’ve gone away, because it’s happened too gradually and slowly, and you’re sort of awake the whole time. If it’s wholesale, it seems more like you’re making a copy of yourself or something, as opposed to actually continuing.

Eric 26:36

Yeah. And who’s your real self? Yeah, dark matter. Another great Sci-Fi not gonna give anything away, but another great one. To see when you’re thinking about that question. So, Sean, are you reconceptualizing how we should think about death? Tell me what you’re writing about right now.

Sean 26:55

Yeah. So I sort of started with the part where I said what I didn’t like about the way people are talking about it, that they’re relying mainly in trying to settle this thing which matters so much for all the group, different stakeholders you’re talking about, which not only matters for them, but where we can’t just let people decide for themselves, because sometimes we have to impose a law on them. Right. So in the case of Jahi McMath, you were talking about, you know, her family was kicked out of the hospital. It’s not as if she could have just chosen, oh, we’re gonna, you know, her family could have just chosen, you’re gonna count as alive.

And, you know, you might have said, oh, they should have given a little more time or something, but at some point, they’re going to be kicked out of the hospital, or they’re going to be taken off their insurance plan, or, I mean, at some point, people are going to have to make decisions for other people about this. It’s not going to be all just people deciding for themselves what they’re going to mean by the term. And so when we’re in that situation, for someone to say to Jahai’s family or anybody who might disagree with the view in question, well, sorry, why are we going to take you off life support?

Well, it’s because, and this is what the president’s, the Bush council said, it’s because the nature of the organism in general is to have vital work that’s directed at the outside exterior environments. And now that you. We’ve done some scans which show that it’s unlikely, it’s sufficiently unlikely for our practical standard that that is possible in the future for you to continue to count as, you know, a living human organism. Right.

Alex 28:22

That’s not in the vital talk, serious illness, communication. This is not the way you break. Right.

Sean 28:29

But that’s the. I mean, I’m not saying that anybody is proposing that that’s how you actually talk, but that’s the underlying justification. If you were to keep asking, why, right. Why is the law that way? What is the public justification? It would be something of that form, right? Something which draws on some idea of what a human being is, which many of our citizens will disagree with, holding a different philosophical or religiously informed review about that. So what I want to do is to try to, what I’d like to see people do.

I don’t know how to do it in all its details, but what I’d like to see us do is to try to just only agree on what we need to agree about. And what we need to agree about is when people still have a right to be in that bed, right, when it’s okay for them to give away their organs to someone else. Right. When it’s okay when they can make it permissible for the transplant surgeon to cut their heart out, something which normally is not permissible to do. Right. So what we need to know is, when does that transformation in, you might call it moral status, moral standing, your rights happen? I mean, we need to know when we should treat you as not dead biologically, but when we should treat you as legally dead. Right?

And so my proposal is to try to think about death in that shallower way, hopefully not in the process. Just coming right back to thinking about it in the deeper way, in terms of biology, thinking about it more in terms of what people’s interests and claims are, what’s at stake for everybody in these decisions, and trying to come to a consensus as a society about where we’re going to draw the line about these rights, about when it’s okay to do these things in terms of those interests and claims.

Eric 30:09

And again, listeners, we’ll have links to Sean’s article on our website. So just go to the show notes for this podcast. I know it’s been a while since you thought about this subject. After reading Sean’s article, what were you think the big highlights were and kind of what popped to your mind when you read it?

Winston 30:28

Yeah, it’s interesting. So it’s been quite a while since I’ve been really, really engaged in this literature. And to be honest, I think there’s probably two reasons why I haven’t been so engaged in questions about brain death. One is that I think I’ve been a bit pessimistic in some ways about the ability to really resolve some of the disagreements at work. And I think that Sean’s paper does a really nice job of getting at. I think, why are we unlikely to make progress in terms of all coming to a consensus or agreement about what are these really, really difficult topics?

And again, one of the things that we should acknowledge, of course, is that when these questions come up, the McMath case being a really, really prominent example, um, these are moments of, like, a lot of emotional distress and tension, right? I mean, this is oftentimes, uh, you know, like a, you know, tragic circumstance right. Oftentimes where people have, uh, you know, suffered, you know, catastrophic, unexpected injury, uh, you know, severe brain injury, you know, to the point at which, you know, we. We may not be able to measure any neurologic function. And, um, you know, you have this sort of setting wherever we just have all these overlays of religion and politics and ethics, but also these very, very intense personal dynamics.

And talking about the McMath case, there’s this great piece by Rachel Aviv, I think is the pronunciation of her last name in the New Yorker. That also speaks to a lot of the particular family relationships and, of course, in that case, allegations of mistreatment along racial lines and so forth. And definitely insensitivity. Um, you know, there’s. There’s this whole complex milieu in which these, these questions come up where, you know, I think any of these sort of, like, philosophical accounts are going to, like, fall very flat if we’re really thinking about, you know, like, what’s happening at the bedside. That said, you know, I think there’s also a way in which. And maybe another way I have moved away from this topic is just that, you know, for all of that difficulty, right. And for all the ways in which every single case of brain death is so complicated, you might step back and say that brain death is working out okay in the real world, right?

Like, if we think about the fact that hospitals around the country, around the world, you know, people are, you know, coming in, they’re being diagnosed as dead on the basis of neurologic criteria, and that we. We do have, like, a relatively operable consensus around this where, you know, it’s working in the hospitals. It’s working for the purposes of, like, transplant. You know, people understand that that’s what activates the transplant system and so forth. And, you know, there’s actually a pretty remarkable degree, again, considering how contentious the basic topics are, this is working relatively smoothly around the world. You know, we have cases like the McMath case, but again, you know, those.

Eric 33:27

Are outliers, like, most of the time. Yeah, this has not happened.

Winston 33:31

2013. Right. Like, so that’s, you know, so we’re talking about the Macbeth case. Again, it’s an awful case, and it affected a lot of people, particularly around here, very, very deeply. And so those wounds are still felt.

Eric 33:43

And I also imagine that potentially changing a definition opens it up for a complete abandonment of a definition. So we are not in a point in this country where we’re agreeing on a lot of things and there’s a lot of opinions and potentially rethinking about what it means to be brain dead. To be dead may open it up to completely destroying a way to continue life like organ transplant, kind of similar to what we’re seeing with IVF treatments. And what does it mean to be alive? Sean, I want to hear your thoughts on that. Is there a danger to this? And does it really need to be fixed because we’re just dealing with outliers?

Sean 34:24

I mean, that’s a great example, Eric. So first, let me be clear that what I’m proposing is not to move away from the brain based definition of death. In fact, I think the fact that it has worked so well suggests that it could be the object of the kind of consensus that I’m talking about, where that consensus doesn’t need to be grounded in metaphysics or in the deepest, most difficult theoretical questions of biology. But it’s grounded partly in the experience of it working, partly in the fact that it is a stable and sustainable way of organizing our common life around these issues.

My advice, and maybe I’m on the wrong podcast, maybe I should be on a podcast for lawyers or policymakers. My advice is more to the president, councils and commissions in that, in articulating why this is the right kind of standard in finding our deeper underlying justification for the law, we should leave out the kinds of philosophy which someone could reasonably disagree with as a basis for lawmaking. That said, and sorry to make a double point here, but I do think it may be important and helpful. That said, I don’t think that we can just sort of go on without thinking about definitions at all. There are issues arising even now, practically, with the definition of death. So some of you may be familiar, some of your listeners may be sufficiently familiar to correct my interpretation of the acronym.

But there’s something called DCD Norpe that’s declaration of cardiac death, followed by normothermic regional perfusion. I say that as a non clinician, I may be stumbling, but it’s a new technique for retrieving organs, harvesting organs, as I generally prefer not to say, which involves letting someone die by circulatory standards, letting their heart and lungs stop, then letting the brain stop working, giving enough time that you brain to stop working, then closing off the artery to the brain, then restarting the heart and lungs to perfuse the organs, while at the same time clipping off the brain so that the brain doesn’t restarts. And the justification for this involves using two different definitions of death at once, so they don’t have irreversible loss of heart. And lung functioning after you’ve restarted the heart and lungs, obviously, or even permanent loss. So there are people who are very concerned about this.

There’s disagreement within, some medical associations are against this. Some are in favor of, and the tenability of this practice and the debate over it is going to turn on how we define death. We can’t just go on without having this conversation because the conversation is instigated by things that are happening and developing as we continue to develop technology.

Eric 37:07

I guess one question which was brought up by Bob in our last podcast on this, we keep on talking about technology that will make this more challenging. Bob brought up in the last podcast, what if technology, will we still need this concept of brain death? Or will it be a relic if we no longer need to procure organs anymore because we can just make them in our lab and put them in? Will this concept of brain death be, you know, like bloodline?

Winston 37:36

I’m very doubtful about that. I mean, I think that we could just take the McMATH case we’ve been talking about. Organ donation was not a part of that conversation, conversation at all. Right? And so the, you know, the most traumatic, upsetting case, you know, we’ve been talking about for, you know, eleven years now, organization was not on the table. That was not a part of the conversation.

Sean 37:56

Right.

Winston 37:57

And it turned on these questions that Sean is talking about in terms of when is it appropriate to, you know, stop doing all of these things, right. And, you know, when we talk about, like, I think, these cases of moral distress in the ICU, it really does turn on those kinds of questions. The ICU bedside nurse, that’s like, why am I coming in every day to provide care to this ventilated corpse or what is going on? So the things that people have distress about, I think they really do turn on the question of death. And I think that organ donation is a possibility that is driving some of these other concerns. But the problem is not going to go away with organ plenitude or something like that, because we’re still going to have the question.

When we have more and more of these technologies, the question that Sean raises is going to become more urgent, which is, ok, well, now we have even more things that we can do, but at some point, we have to stop doing these things, having more stuff that we can do in medicine. We’ve never run out of things to do. We keep coming up with more, more ways to intervene.

Eric 39:11

And then, Sean, let me just get to the heart of your argument. Explain your argument one more time for me, because I’m going to mess it up.

Sean 39:18

So you get, I mean, it’s not just that you lose something when you die, you also get something. Right?

Winston 39:22

Yeah.

Sean 39:23

So what you lose is you don’t get the bed anymore. What you gain is you can give your organs away. Right. Among other things. Right. So the question is when do we want to switch things around in that way? When do we want to change the way that we think about what we’re going to let you do with your body? Right. What we’re going to do for and let you do with your body? When do we change that around? Right. And so I want to say, instead of figuring out when to change that around by doing a lot of really deep metaphysics and theoretical biology, we should think about it more.

I mean, to put it really bluntly, like when do you not have a use for your body anymore? When is it no good to you? Right. Well, when it’s no good to you, we don’t have to support it and you can give it away. Right. And so that turns the question to this more practical question of how do we think about in which ways our bodies are useful for us and what claims that imposes on other people.

Eric 40:12

Wouldn’t that also be very challenging in a similar way? Like, I mean, we currently, most of what we’re focused on is irreversible loss of consciousness and breathing and a pulse. So probably not everybody agrees that irreversible loss of consciousness is, is a point where we should be stopping life sustaining treatments or other interventions.

Sean 40:37

But we’d have to have a debate about whether. And this is where in one paper, I can’t figure it all out. It’s more kind of framework setting than answering all the questions. We’d have to have a debate about whether if someone says my body is still good to me, even though I will never be aware of anything that happens to it again, how should we take that claim? Should we be willing to say it’s good to you in a way which gives you a right to stay in the bed and, you know, which someone else might use? And maybe we do. Right, but I. But, but I just want to have the debate on that. On those terms. Right?

Eric 41:05

Yeah.

Sean 41:06

And I suggest that we need that we’re going to have the debate on those terms either way. Right. Even if we have the biological debate, we’re still going to have the ethical debate. Right. And my claim, and this is the paper goes into more detail about this, is that we can have the ethical debate whilst avoiding the metaphysical debate. Right. So I’m not saying it’s going to be easy, just that it’s going to be easier. Right. Because we’re only going to have to do one of the two things that the other guy wants, the other side wants to do.

Eric 41:33

Winston, any last thoughts on that?

Winston 41:35

Well, I mentioned a kind of pessimism I have about the conceptual state of play. And again, it’s not so much of a worry about practice. It’s really more about are these disagreements going to go away? And I guess, you know, I think, as I said before, I really like how Sean and his paper gets at what is making so difficult. But I guess I’m not sure I’m less pessimistic after reading Sean’s paper about his project. And to a certain extent, you know, he asks a question about, well, instead of answering this biological or maybe metaphysical question about, you know, what is death? We can ask this question about when are these kind of like death behaviors or when is this change in status appropriate? But I think my suspicion is that in most cases, people are going to say, well, it’s appropriate when I’m dead.

So I guess I wonder a little bit about, I think in most of these cases, what we argue about when we’re arguing about death is when somebody’s dead. And the substance of the disagreement, let’s say, in the McMath case or other cases, is a disagreement about the substantive matter. And it is whether or not we should believe the experts. And I think that Sean makes some really sensitive points about, well, it’s really tough to like if somebody doesn’t agree with the experts to force them to go along with what the experts say. But again, the substance of the disagreement is about that they think the experts are wrong, not about whether it’s Jahid case.

Eric 43:12

It was like she’s still thinking. She’s still acknowledging us. She’s still there, she’s moving when we’re talking to her, acknowledging that that consciousness was still important for the McMath family when they’re thinking about, she’s not dead.

Winston 43:27

Right.

Eric 43:28

Okay, real quick. I know we’re out of time.

Alex 43:30

We’re out of time.

Eric 43:31

If you had a magic wand, okay, what would you do next, Winston? Would you do anything or just say, you know what, this is good enough, folks. Let’s just not rock the boat?

Winston 43:43

No, I think that, like Sean is saying, these questions are going to keep coming up for us. Right. And so we’re, we’re going to need to keep addressing them and, you know, we’re not going to be able to avoid them. So I wasn’t saying, you know, like, we shouldn’t talk about it. I was just saying more like, I haven’t been super motivated to write about this topic, in part because I’m not seeing, like, a way out of it or a problem to fix, but I’m all in favor of other people doing it. And at some point I may wind up jumping back in, but I think that I might spin the question out from just death and just say that again. These kinds of questions are coming up for us all the time with advances in medical technology.

And so Alex was referencing, really, these two exciting new papers in the New England Journal of Medicine, one on communication, one on disorders of consciousness. And I think to some extent, it just goes to show that we’re not going to be able to avoid some really, really difficult questions. And I think we’re going to need to think about questions like the ones that Sean is raising about what are the tools we have available to deal with these questions as they come up. And in some cases, can we ask a relatively restricted legal or political question, or in some cases, are we just going to have to dive in and do the deep biology or philosophy thing and, yeah, we’re not going to be able to hide from these questions for sure.

Eric 45:04

All right, real quick, Sean, I know we’re out of time. How would you use that magic wand?

Sean 45:09

Yeah, I mean, I think we have to solve all our social ills to solve this one in certain ways. Right. So our big problem that you alluded to earlier of not having a kind of common political culture in which we can discuss things like this at all. Right? So if we had a better idea of how we can come together to address the kinds of political and legal questions that I think we should try to rest ourselves, rest our thinking.

Eric 45:32

Let me ask you this. What do you want people to do with your paper?

Sean 45:35

Well, I hope they read it and decide for themselves and maybe tell me what’s wrong with it so I can.

Eric 45:41

And that third presidential committee.

Sean 45:44

Yeah, I mean, there’s something, an American bar association committee, but yeah, maybe there needs to be a presidential one, because I do think that there needs to be the kind of deeper and broader thinking that that brings to it, as opposed to a purely technical or legal discussion.

Eric 45:58

Well, as everything must cease, so does this podcast. But before we do, I think we have a little bit more.

Alex 46:10

(singing)

Sean 47:00

That’s great.

Eric 47:01

That’s like out of a musical like Les Miserables or something.

Alex 47:05

Fun choice.

Eric 47:06

Winston, Sean thanks for being on the podcast.

Sean 47:09

Thank you.

Eric 47:09

And thank you all our listeners for your continued support.

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Disclosures:
Moderators Drs. Widera and Smith have no relationships to disclose.  Guests Winston Chiong and Sean Aas have no relationships to disclose.

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