No Easy Answers in Bioethics Podcast
Clinical and Legal Perspectives on Brain Death: Stahl and Tomlinson - Episode 11
January 21, 2019
What does it mean to declare brain death in the clinical setting? How does the language we use surrounding death complicate these situations? What beliefs and philosophies exist regarding what constitutes the death of a person? Center for Ethics and Humanities in the Life Sciences faculty members Dr. Devan Stahl and Dr. Tom Tomlinson discuss these questions and more from both clinical ethics and philosophical perspectives. They go over the history of how brain death came to be defined in the United States, and discuss some cases in the news from recent years.
This episode was produced and edited by Liz McDaniel in the Center for Ethics. Music: "While We Walk (2004)" by Antony Raijekov via Free Music Archive, licensed under a Attribution-NonCommercial-ShareAlike License.
- Bioethics in the News, January 2014: A Brain Dead Little Girl Raises Some Big Questions by Tom Tomlinson, PhD
- History of Bioethics Commissions via bioethicsarchive.georgetown.edu
Liz McDaniel: Hello and welcome to another episode of No Easy Answers in Bioethics, the podcast from the Center for Ethics and Humanities in the Life Sciences at the Michigan State University College of Human Medicine. This episode features Center faculty members Dr. Devan Stahl and Dr. Tom Tomlinson. They address the topic of brain death, discussing how we came to define brain death in the United States, the complicated language that often surrounds death in the clinical setting, and the beliefs and philosophies regarding what constitutes the death of a person.
Tom Tomlinson: I'm Tom Tomlinson, from the Center for Ethics and Humanities in the Life Sciences here at Michigan State University.
Devan Stahl: And I'm Devan Stahl, and I am also here at the Center at MSU.
TT: Well, so we're gonna talk a little bit about some issues that have been a lot in the news lately, in a variety of ways, around determination of death. And especially of so-called brain death. And, you know, this is sometimes, these are sometimes situation that Devan and I get involved with in our clinical consultations. We recently had a situation of a young man, actually, who suffered a severe injury and ended up whole brain dead on the ventilator. And the family were very, very distressed of course by what happened to him, and just could not believe that he wouldn't recover. And that he was, in fact, under the law in the state of Michigan, dead.
DS: Right, and so I wouldn't say that these are common cases, but maybe once a year or so we will get a case where physicians call us because the family just is not accepting this determination of death. And so there's all sorts of questions about how do you talk about death? The person in the bed supposedly is dead but doesn't look dead.
DS: And so this is part of the big problem is that when brain death is declared or when death is declared in these circumstances, that patient doesn't really look any different than they did, you know, earlier that day or the day before, or when they came in, even.
TT: That's right. I mean their, their heart's still beating, the ventilator is taking care of respiration. You know, all the various organs of the body are being oxygenated and sustained. So there's a body that is surviving, if that's one way to talk about it, and so it's hard and understandable how difficult it is for families to believe this. And so one of the things that Devan and I did recently was to develop a kind of a tip sheet that helps the clinicians at the scene have hopefully more productive discussion, conversation with family to help them come to the realization that their, despite appearances, their loved one is gone.
DS: Right, and so hopefully that's helpful to our providers who, you know, I think sometimes struggle with the language of death. Even using terms like “brain death” which might not actually be helpful because what regular person understands the different between death and brain death, right? Are they not the same thing? It sounds like maybe they're different things, and so it's hard to accept when suddenly we're using terms that nobody understands, and it doesn't sound like death because you put that sort of caveat in front of it. So-
TT: Yeah, it's modified. Yeah, that's right, but of course under the law of the state of Michigan, and most other states which follow the [Uniform] Determination of Death Act that was promulgated, what, in the early ‘80s or something?
TT: '81, yeah I was around then.
TT: It doesn't matter. Someone can be dead in the old-fashioned way under the law, that is there's irreversible cessation of heartbeat and respiration. The old-fashioned way to die. Or someone can be dead because there's irreversible cessation of all activities of the whole brain. And that's maybe not quite verbatim from the law, but it's pretty close.
DS: That's pretty close. I'm looking at the definition here. But so maybe we should ask how did we get there, right? So Michigan has this in the state law, but actually all states do. And we'll get to some of the religion exemptions in a second, but we got here, in part, because of a history of medicine advancing and technologies advancing in a way that kept bodies in a state we had not presumed they would ever be in before.
DS: And so we should talk about some of that history, because it goes back to at least the '60s.
TT: Oh yeah, and I was around then too, Devan.
TT: So, yeah, so one of the, the things that were coming together in the late '60s into the early '70s were a couple. One was the development and more widespread use of ventilators, positive-pressure ventilators. Before, any time someone suffered a really severe brain injury that would impede their ability to, for spontaneous respiration, they'd die pretty quickly because they wouldn't breathe anymore. But once you've got a ventilator available, you can put that person on the ventilator and that takes care, that serves the function, the same function that was served before by the brain is now being served by the ventilator. And so these patients then could be kept alive for long periods of time, but they were hopelessly ill. They were never gonna recover. And the other thing that was happening about the same time was the advances in organ transplantation. And in particular the development of better immunosuppressive drugs that made successful organ transplantation more likely. And you put those two things together and all of a sudden those patients who are supported on ventilators, hopelessly ill, might in fact be very, very good sources for transplantable organs. Because if I want to transplant an organ into somebody else, and hope that it's gonna work, I want it to be perfused with blood for the whole time, almost the whole time between the time I take it out of the body and put it into someone else's body.
TT: And if there a, there's a gap there where I take the organ out and there's some period of time where it's not being perfused, that produces lots of damage to whatever it is, the kidney or the liver, whatever it is I'm transplanting. Makes it much less likely to succeed. So these new class of patients now are a very tempting source for better transplantable organs.
DS: So we have this perfect confluence of events, so we have this increasing population of patients who are in perhaps irreversible comas, who are getting ventilator support. And they're taking up beds in our hospitals, right?
DS: So, you know, we don't know what to do with them, we think that it might be irreversible, and yet we can't take off life support at this time. So in the '60s we're thinking, most, the consensus was you keep somebody on life support until they're dead. So we have this population of people who we think are irreversibly dead.
TT: Dead in the plain old way.
DS: Dead in the plain sense. Well, so there's argument, there's debate here, right. So, later people would say this is, this is the same thing we've always said, we just didn't know how to define it. There are then people who would say, brain death is actually a new definition of death, and so there's some debate there. Because the initial committee, this ad hoc committee at the Harvard School of Medicine met in the '60s. And saw the sort of confluence of events and said we need to come up with a definition of death that makes sense to what's going on with our patients now.
DS: Include, and they said, you know, well brain death is potentially always been death, we just didn't know how to you know sort of figure out when that was happening. Or there wasn't really occasion to figure that out until ventilator support. And, and these are a good supply of organ donors perhaps, and so if we could redefine death in a particular way, we could make sure that these patients aren't sort of being kept on life support terminally, which is not good for them, but also we could potentially get organs from them. That's the maybe more cynical view of it.
TT: Well the problem was, was an ethical and a public relations problem because what you don't want to be seen as doing is changing the definition, changing what it means to be dead-
TT: -In order to be able to get more organs from people.
TT: Because then you're, you're engineering the concept of death. And so one of the very first efforts then to provide some kind of philosophical foundation for the view that brain dead, patients who are whole brain dead, are just as dead in the same way as patients who suffered a cardiopulmonary death, is to argue that death, the death of a human being is the same as the death of a dog or a cat, same as the death of a begonia. It's the disintegration of the organism. So an organism is alive when all the parts are working, and they're integrated, and it makes up the whole organism. And so death then is the disintegration of the organism. So that was the concept of death that got argued for very successfully by a neurologist named James Bernat and one of his colleagues whose name I can't remember right now. That was very influential, it was actually taken up by the first Presidential Commission, bioethics commission that was appointed by Jimmy Carter back in the early '80s. And the idea then became, okay, well if that's what it means to be dead, is that the organism disintegrated, all we have to do is figure out what integrates the organism and when that's gone, then the organism's no longer alive.
DS: But of course we already knew that, right? So for a couple hundred years we had decided that the brain was the most important part of the human body, and-
TT: But not for that reason, because we didn't really understand what the integrating functions of the brain were. We knew if you cut someone's head off they died. [Laughs]
DS: [Laughs] That's a surefire way to know.
TT: Yeah, and we did it a lot.
TT: But, so the argument was the brain is like the captain of the ship, and it's integrating the whole rest of the organism and once the brain's gone and it's no longer functioning at all, there is no integration of the organism. And it's the same disintegration as if someone's heart or breathing irreversibly stops. And so they, it's the same plain old, same death, it's just that we're deciding when someone's dead in these two different ways.
TT: We either look at the brain, or we look at the heart and lungs, either way is perfectly okay.
DS: Of course we know that that's probably not true about the brain, but we'll sort of set that aside for a second. And the ways that, in which these first committees got together and decided what the tests were, we would never accept today. There's crucial things that they missed, but the idea became very prevalent, became very popular, especially after the President's Commission. And then we got the Uniform Determination of Death Act, which is a model for states to make laws that said that this new definition of death or this old definition of death that we've carried forward in a new way, is now the definition of death. Of course not every state adopted that immediately, so we had this weird state in the '90s where you could be dead in one state and you could cross state lines and suddenly you wouldn't be, you were resurrected. [Laughs] So we had resurrection doctors once again. And I think that it wasn't until maybe the later '90s that we, most states began to adopt-
DS: -This standard.
TT: Yeah, so... I want to go back to the idea that the brain is the integrating organ in the body because what we've begun to see, or actually have known for quite some time, is that once you've put that brain dead body on a ventilator, and provided other kinds of supportive interventions, you can keep that body alive, I'll say, in raised eyebrow quotes, for quite a long time. And the most recent example of that is Jahi McMath.
TT: She was declared brain dead by a hospital in California, I wanna say about 2013 or so, or something like that, or '14, and she only died just last fall.
TT: Officially. According to her family, died. She was kept alive, her body was kept alive, I keep trying to correct myself.
DS: It's complicated because where she was in New Jersey she wasn't dead anymore.
TT: That's right. Because New Jersey is one of those states like New York, which actually allows for kind of religious exemptions.
DS: That's right.
TT: So for certain, certain people think that the heart of course is the, is the, where the soul resides. And it's the heart that's the center of the person, and so it's only when the heart dies that the person's died.
TT: So there are some states like New Jersey, they have a Uniform Determination of Death Act statute that allows people to be declared dead who are whole brain dead, but families can take exception to that. And that's what Jahi's family did, they moved her from California to New Jersey.
DS: And she wasn't dead.
TT: She was dead in California, she was, became, well, at least not dead.
DS: Un-dead? No, alive again. She was determined to be alive again.
TT: In New Jersey.
DS: That's right. And so probably a lot of people have heard of that case, but so the initial committee that met more or less decided that nobody could survive more than a few days without this. And we've since learned that that's not true, people can live potentially years, "live," again in scare-quotes. Their body can be kept functioning years after the declaration of brain death. So that throws a wrench into some of it. For the most part people buy into these laws, but I think that there's still considerable debate about whether we're really testing the right things, whether, so some of the debates that I hear a lot, so of course there's the “is whole brain death the right definition of death?” So those, of course, so that means sort of all the higher functions of your brain and your brain stem. So that's why we say whole brain death. Because there are some people who think that it's just the higher brain that needs to be gone before you should declare death. So there's this other camp-
TT: That's me.
DS: -Yeah. Maybe Tom, not me, who think that it's really, the higher brain and not the, even if your brain stem is still functioning you should still be considered dead. And then of course there are those folks like we just mentioned who think circulatory death, somatic death is, should be the only standard.
TT: Well I think, I think what's been happening and certainly what's been happening with, illustrated by Jahi McMath is that this whole idea that the brain is the quintessential and absolutely necessary integrating organ in the body is just not true. The body has lots of other ways to keep itself alive that are below the neck, and Jahi's the proof. I think the, the world record for how long someone might, someone's body might be sustained in that way is 20 years.
DS: That's a pretty long time.
TT: So that's a pretty long time, and it really undermines the idea that even if death means the disintegration of the body, whole brain death doesn't lead to the disintegration of the body.
DS: I think there was also a question with Jahi McMath's case of, so how good we are at determining death using neurological criteria, because there were a lot of debates about whether the doctors actually misdiagnosed her.
DS: Right, and there have been other cases in the news where people were declared brain dead and actually recovered. And that's pretty scary.
DS: So if we think, you know, this is really the best determination, maybe we're just not doing the tests very well.
TT: Well, I mean part of the problem is how would do a, how would you gather the evidence of the reliability of the test? The problem is that once someone's determined to be whole brain dead, that is under the law, plain dead, you withdraw treatment.
DS: Right, so we can't know if they weren't really dead.
TT: We don't have a population that we've, we don't have a large enough population, randomly selected, that we would actually be able to find out what the error rate might be for these determinations.
TT: So it's, it's kind of a way, it's kind of an act of faith.
DS: Right. So there's also debates in bioethics that have come up recently about whether families are allowed to deny that testing. So, do they have to give informed consent for the bedside test which determines whether the person is dead or not. Because if the family is against that determination, they might object to even the testing. Which I think most places don't require informed consent, but this has become sort of an issue.
TT: Well our local hospital doesn't.
DS: Yeah, so what if the family jumps in and says you're not even allowed to do the testing, and therefore we can't really know. So that puts us in a bind as well.
TT: Yeah. I mean I know that, part of the problem here is also just the kind of the language that we use. So, and the way we introduce these, these difficult decision to families. We might, someone might say to them, well I'm sorry, but our studies show that John's brain is completely destroyed, it's not gonna come back. And sooner or later, even with the machines, he is going to die. Or, they may say, you know, once we take him off the ventilator he's going to die. And this is, these are very common ways of talking in the intensive care unit, and obviously they're confused if in fact the patient is just dead.
TT: Because they can't die twice. If they're already dead before you take them off the ventilator, they don't become deader, once their heart stops.
TT: So it's, these are very fraught communication challenges, and there are so many ways in which families can get confused by the way in which the caregivers talk about those patients.
DS: And so, I think maybe just the last sort of debate that we can bring up, and maybe it's so much a debate in bioethics but it's garnered a lot of media attention, is what we do with women who are dead, who are dead by neurological criteria who are pregnant. And there was a case that was out in the news pretty recently about a woman from Texas who was 14 weeks pregnant, and Texas, the hospital she was in determined that the law said that they couldn't discontinue her life support because that life support was also helping her fetus.
TT: Right. So she was no longer, you couldn't kill her. But you could still, quote unquote “kill her fetus” by removing her life support that was actually supporting the fetus. The fetus wasn't dead.
DS: Right, which is, again, kind of testifies to the sort of miraculous body, that it could sustain that kind of life.
TT: Well there've actually be a number of cases of pregnant women who are dead under whole brain criteria and who have been successfully brought, or their bodies rather I should say, have been successfully brought to term.
DS: I mean it's pretty incredible. Although with this case, because she was so newly pregnant at 14 weeks, that the fetus wasn't doing well, and finally a judge declared that she had actually been very clear, she was an EMT worker and so was her husband. They had been very clear with each other about what their wishes were. And this was not her wish. And they finally got a judge to agree to that. But, I think it's an open question about whether, you know, the woman's sort of prerogative in that moment overrides that of her fetus, and in some states like Texas we've decided that the answer is no.
TT: No. Yeah, that's right.
DS: So that's one other thing I think is gonna continue to be an issue, with, you know, this whole idea of brain death, is what do we do with this other person now.
DS: If, you know, the fetus is indeed a person. So more to think about in the future, but I think we've raised a lot of important issues surrounding brain death. Any final thoughts?
TT: Well, I just want to put in a little plug for another concept of death, which has to do with the death of the person. So, we often talk about death as if, in personal terms. We say, Tom has passed away.
TT: Tom is gone.
DS: What a sad thought. [Both laugh]
TT: Tom is gone. You're not talking about my body, you're talking about me.
TT: And when I ponder my own death, it's not my body I'm worried about, it's me. It's the cessation of all of my experience, that's what death means to me from the inside.
TT: And so it's a very plausible way to think about what it means to be a human being who's dead. So that the death of a human being is something fundamentally different than the death of a begonia.
TT: Or the death of any other non-conscious organism, non-sentient organism. And, so why not use that as our definition of death, and then we could still use whole brain death as a criterion. Because it most certainly is true that if I'm whole brain dead, then Tom the person is also gone. And never going to become, never going to come back. So we could use the very same standard, but it'd be a standard for a different conception of death. That wasn't biologically oriented, but was personally oriented.
DS: Yeah. I think that opens up a huge philosophical debate there about what constitutes personhood and identity, and so I'm not sure I wanna go there with you.
TT: Is that going to be part two?
DS: That's gotta be part two. [Laughs] Yeah, we'll save that sort of larger discussion for another time, but I think you bring up a good point. A point that I think is quite debatable.
TT: Yeah, alright.
DS: Okay, good.
LM: Thank you for joining us today on No Easy Answers in Bioethics. Please visit us online at bioethics.msu.edu for full episode transcripts and other resources related to this episode. A special thank you to H-Net: Humanities and Social Sciences Online for hosting this series. This episode of No Easy Answers in Bioethics was produced and edited by Liz McDaniel in the Center for Ethics. Music is by Antony Raijekov via Free Music Archive.