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Clinical Trials and Death: An Interview With Bioethicist Peter Koch

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Many ethical concerns are raised after patients die in clinical trials. Once a patient dies, what happens to their consent? Join Darshan Kulkarni as he talks with professor of philosophy Peter Koch about the rights patients have after death. Plus, we’ll discuss the principles of “do no harm,” and how this applies to patients who have passed away.

Narrator: This is the DarshanTalks Podcast. Regulatory guy, irregular podcast, with host Darshan Kulkarni. You can find the show on Twitter @darshantalks or the show's website at darshantalks.com.

Darshan: Hey, everyone. Welcome to another episode of DarshanTalks. We have with us esteemed ethicist, world-renowned bioethics expert, Peter Koch. No relationship to the brothers. He's just extremely rich is what I gather. [inaudible 00:00:38]

Peter: Some big shoes to fill already, Darshan.

Darshan: No, Peter and I met and we've been talking about bioethics actually for several months at this point and he was kind enough to agree to jump onto the podcast and talk to us. We were discussing some different topics and he was telling me about topics he explores and the one thing that really popped... And there are two different topics we were considering. The one topic I'm really, really excited to explore is this bit of information around can I do clinical trials on patients after they've passed away? What rights do patients have after they've passed away? But before we get into that, Peter, do you want to introduce yourself to us?

Peter: Sure. Yeah. I'm an assistant professor of philosophy at Villanova University and my interests are really in clinical ethics, less on the research side, more on the decision-making, patient/physician/family interactions. I did my post-doc a few years ago in clinical ethics, so it's a pretty specific field in that sense. Generally I work in bioethics, some philosophy of medicine, which are questions of what counts as a disease, what counts as a disorder, et cetera. Yeah, so looking forward to being on your show.

Darshan: Thank you. So, let's start with the basics. If I am a patient and I agree to participate in a clinical trial and then I pass away, first of all, does my consent carry over?

Peter: Also to lay the groundwork, let's keep it all within an ethical framework because laws reflect different things in different places.

Darshan: Fair enough.

Peter: A good parallel is organ procurement because organ procurement of vital organs takes place after death. When we talk about whether or not we can take organs from someone or do things to someone after death, we're talking about a whole different set of what's at stake ethically from prior to death. Before somebody dies, one of the things that we're concerned about is their wellbeing, how this impacts how well their life goes. So that's how you get all these really fundamental ethical principles like do no harm. That's a claim about how we should treat patients and how we should maximize their wellbeing or at least promote their wellbeing without causing undue harm to them, which is essentially a drop off of wellbeing.

So that's a really fundamental way of approaching how we treat people and people can say, "Yeah, you can risk harming me as long as I consent." The typical consent framework is "I realize you're going to do something to me and my body, and I'm going to waive my typical right against someone doing that and now they're permitted to do it." So the interesting thing about after death is it raises a ton of philosophical questions about what does it mean to wrong someone after death? And even more problematically, what would it mean to harm someone after death? There's a lot of good, classic examples about this.

For example, if say, Darshan, you put together a really nice trust for future generations and you're like, "I want my grandkids to inherit X, Y, and Z or my kids." And so then you die and then your trust gets activated or executed, whatever you want to say, and we've totally misused and abused your trust. We don't use it in the way it was... And we slander your name, all these things. So the question is have we done something wrong to you?

Darshan: Right.

Peter: Is there a subject of the wrong? Put aside for a minute debates about the afterlife, whether or not we continue to exist in some other thing or whatever. Just in the ordinary sense of me talking about Darshan at this time, after his death, what could ground the wrong?

Darshan: For me personally, what you're describing is... There's actually a Netflix documentary on this called The Art of the Steal. Have you heard of this?

Peter: No.

Darshan: Okay. The Barnes Institute, which is a famous art place that I'm sure you're aware of, but...

Peter: Oh, yeah. Right here in Philly.

Darshan: [inaudible 00:05:57] Exactly.

Peter: Yeah, yeah.

Darshan: It used to be up in, I think, it's either Upper Merion or Lower Merion outside Philadelphia. Dr. Barnes just happened to be friends with the world's best artists at the time and he was a big supporter of the arts. And when he died, he made a promise that, "You know what? You can have all my art, I give it away. But with the [inaudible 00:00:06:20], but it can only be put up where it is. You cannot move it out of this location." So it was billions of dollars worth of art.

Peter: I remember this whole debate happening here. It was a big thing. Yeah. Yeah, totally. I didn't realize they'd made a documentary about it, but it makes perfect sense. It was kind of a semi-scandal, right?

Darshan: Right, right. Exactly. So they made a whole documentary about it. Short version, they moved it. That was the one thing he requested not to happen, which to me is very reminiscent of what you're describing right now, which is the trust had a very specific goal and we as a society, X number of years later, decided to violate that. Did we at that point ethically not do the right thing? Is that [crosstalk 00:07:07]. Go Ahead.

Peter: Exactly. This is part of it. One is, did we not do the right thing? And a lot of people will be like, "You didn't do the right thing." But then the second question... Which is where you're getting close to the heart of ethics. Not you in particular, but when you ask these questions... Is what is, sometimes what we call the wrong-making feature of this? Why is it wrong? We can instinctively say, "It's just wrong to misuse a trust."

Darshan: Right.

Peter: But then what is a wrong-making feature? And also, can it be overridden? So...

Darshan: Can a trust be overwritten or can the original opinion be overwritten? Because trust is easy to override.

Peter: Oh yeah. I mean the original opinion and also ought to be overwritten in the sense of is it ethically permissible to override? What would be the grounding for overriding it? So take Mr. Barnes, for example. It would be weird to say we harmed Mr. Barnes. In other words, make his life go worse because there doesn't seem to be a subject there anymore.

Darshan: Right.

Peter: So we've violated some interest that Mr. Barnes had when he was alive and now these interests continue, even though Mr. Barnes doesn't continue. So where exactly is the wrongness in that? It's a kind of big theoretical question, right?

Darshan: Yes.

Peter: So we're like, "Okay, we've violated Mr. Barnes' interest somehow, even though he's not really there, but it seems to be like there's some overriding good, the reasons for which we violated his interest.

Bringing it back to the question of clinical trials and your death. Prior to death, we are concerned about the adverse effects of trying certain things on you, right?

Darshan: Mm-hmm (affirmative).

Peter: At least in part. And so we gain consent. After death, it's hard to see what harms could befall a corpse, essentially.

Darshan: Well, I could answer that, which is what if you're talking about some kind of reanimation?

Peter: Oh, so [crosstalk 00:09:35] Good. So if we're talking about reanimation that opens up a whole nother can of worms, which is one, do we think that [crosstalk 00:00:09:47]. What's that?

Darshan: I don't know if that was the study, by the way. I just made that up. But I assume... [crosstalk 00:09:53]

Peter: We can totally take that direction. That's super fascinating. Exactly. The structure that I'm thinking of is the typical structure of death is irreversible. And if you look at pretty much all the literature on death up until... You have this pocket, of course, like transhumanism, all this stuff, which is... We can get into whatever. But when you look at all of the medical practices that surround death, they operate with one of the conditions of death being irreversible, which is why you have determinations of death the way they are, which is again, why you have organ procurement being permissible when it is. It's required by the dead donor really. You don't take these vital, unpaired organs. You have all these practices of things you cannot do to living people, but that you can do to dead people, because the assumption is death is irreversible so there's going to be no reanimation.

Darshan: Right.

Peter: But if reanimation occurs, that whole window of being dead, you could now account for harms during that.

Darshan: Right.

Peter: There's a philosophical debate about whether or not death is irreversible, what it would mean for it to be irreversible. So there is a question of whether it's logically necessary for death to be irreversible, in the sense that when something's logically necessary, you could not conceive of it being otherwise. As opposed to something being practically necessary. And I'll give you an example of the difference between the two.

It might be a practically necessary fact that human beings won't grow to be 20 feet tall. In other words, it's very, very, very, very likely it's not going to happen, but it's not conceptually impossible to imagine a 20 foot tall human. However, it is logically necessary that a square has four sides. You can sit there all day long and think about a three-sided square, but you're really thinking about a triangle. You're not thinking about a three-sided square, right?

Darshan: Right.

Peter: So the question is, is it a component of death that it's irreversible like four-sided is to a square? Or is it just something that's so far has been a rule of thumb about death. That it's, you know what I mean? That it's like a 20 foot human.

Darshan: I love that you're [crosstalk 00:12:58] death like a rule of thumb.

Peter: That it's irreversible. So, if you want to leave open the possibility of re-animation, then cremation could be a serious, serious harm.

Darshan: Oh, wow. I hadn't even thought of that.

Peter: Because we're really robbing someone of a nice reanimation possibility. Okay. But you can see how the typical structure of when we're worried about what's the wrong thing to do to somebody, changes at the point of death, because we have very different considerations, generally speaking. Yeah.

Darshan: I'm here. I'm thinking about the implications of this, because you're right. If we start thinking about things, as like you said, rule of thumb versus just inherent. And now because of you and because of this thought process I'm going, "Is that at that point a second life, as opposed to reanimation of the first life. And does that have its own implications?"

Peter: Oh, man.

Darshan: [inaudible 00:14:21]

Peter: This is a great question too. This is a category of questions we call personal identity and persistence conditions. It's like what things could happen to you that you could endure and it could still be you after the event happens.

Darshan: Can I give you an example that I think is perfect for this actually?

Peter: Yeah, yeah, yeah.

Darshan: Which was, I heard about this guy who was on death row. He died and then came back and then said, "You can't put me back to death because I already met the condition."

Peter: That's a good one. Yeah.

Darshan: Yeah. I think the court said, "No, that's not how this works." But [crosstalk 00:15:10]

Peter: [crosstalk 00:15:10]

Darshan: [crosstalk 00:15:12] angle, "Because I met your condition for my first life. This is my second life. You can't give the second person a new death."

Peter: Yeah, exactly. So there's been some interesting cases of... I don't know if you recall Jahi McMath a few years ago. She was, I want to say pre-teen, maybe she was 11, went in for a tonsillectomy and ended up being diagnosed brain dead. Which is legal in clinical death. Then she was transferred to a state that essentially had an opening where they didn't legally have to equate brain death with death. So she legally resurrected when she moved from California to New Jersey. She had a death and then a reversal of the death certificate just by crossing state lines.

But going back to what we're saying really early on, is just distinguishing between... There's all these legal structures, et cetera, but we want to talk about the biological phenomenon of death and what that would mean to you, to your persistence conditions. Can you, as Darshan, as a person, survive the disintegration of your organism, essentially, even if it's temporary.

And I'll give you another example of how these puzzles come into play. Some people argue that persons are essentially psychological beings, like psychological continuity where you, Darshan, are identical, or you persist across the period where you have your thoughts and ideas and psychology all are continuous. Essentially, there's enough connection between them. Which has the kind of odd implication... When you start doing tests on this, people think that this is pretty intuitive in some senses. But, imagine that you develop severe Alzheimer's and you dramatically change, you lose any sort of connection to your past self. Arguably a new person has popped into existence, if you have a psychological view of continuity. If you have a purely materialistic view, strictly materialistic view, then you actually don't retain the same material throughout your life. You swap out cells. So then people are like, "Well, that's the simple materialism, but the living animal." And you're probably going to regret having a philosopher on your show, but...

Darshan: I'm loving it already, so...

Peter: So, the animal view is strange because the arguments that people use are imagine that you, Darshan... I think you'll like this, because you like kind of transhumanism stuff, right?

Darshan: I do.

Peter: Imagine you get in a terrible car accident and your cerebrum remains intact, your upper brain. But the rest of your body is completely battered. You would be immobile, completely dependent on other people, tons of pain. So we're like, "Let's take Darshan's brain and put it into another body that you can make it just like Darshan's." So the question is, where do you go? Do you follow your brain? Or do you get a new thing? This is kind of... Go ahead.

Darshan: It reminds me of original Greek philosophy argument of the ship of Theseus. Have you heard of that?

Peter: Oh yeah, totally.

Darshan: Yeah. Just for those who haven't heard, it's basically a ship goes away and every so often they'd replace the wood boards on there and they'd replaced the mast and replace the sails. So when the ship comes back, was it the same ship that came back or was it a different ship? Because they replaced all those things. It's the same exact argument, but for a human.

Peter: Yeah and it is, and part of it is what are your essential features? Like a ship has a whole bunch of parts that contribute to the ship as a whole. And there's interesting variations on the ship of Theseus where you have the ship, you pull off one plank, put it in a warehouse and you replace it. Then you pull off another, put it in a warehouse, replace it. And you think you still have the same ship, but then you get to the end and then you go to all those old planks and then you rebuild it. And you're like, "Okay, which one is the ship of Theseus?" But for humans, it's true that we swap out parts, like a ship of Theseus all the time. But what is the essential part that if you lost it, you would no longer remain there?

Your options are you go with your brain, in which case it seems like your essential feature, that which you can't do without, is... And it's your upper brain in the case of the example we gave. So it's your psychology. You follow your psychology, which is why people abide by or hold that view that you're essentially a psychological being. Or you remain in that battered body and a new entity comes into being where your brain went. Or perhaps that body where your brain went, it just remains that body, but with a new psychology. So these are metaphysical questions about what constitutes a person and where a persons go.

Darshan: I'm going to add another option in there, which is... Because you mentioned transhumanism. That's one of my shticks, if you will. But what happens if I take my knowledge? If I'm dying, I take my knowledge, put it into a computer and now the AI is interpreting what Darshan wanted? [Crosstalk 00:22:04] then for me, if the AI is me or was based on me?

Peter: It's problematic for the psychological continuity view because one... If you could only upload your psychology to a single whatever entity, then it'd be less problematic, because you'd be like, "Darshan goes where it is." But we can replicate that. We can have a thousand Darshans, right?

Darshan: Right.

Peter: So, they all seem equal candidates for the continuity of Darshan. So do we have a thousand Darshans? But we also don't want to say that...

Darshan: [crosstalk 00:22:46] Does it matter [crosstalk 00:22:48] comes to this argument if we all have the same opinion?

Peter: Well, it does matter in the sense of moral culpability, for example. Some of the really fundamental things that we're concerned about people is what sorts of things are responsible throughout their life? What interests they have continuing throughout their life that can be frustrated or fulfilled to make their life better or worse? What interests are authentic to them versus what interests are inauthentic or whatever? One, there's a lot of interesting questions about moral responsibility and also questions about wellbeing across time. And questions about, fundamentally, when we have persons, there seems to be a strong, intuitive pull that multiple persons they're all distinct from one another and they all exist within temporal spatial points. So when you have this replication problem and you have equal candidates, then it seems to undermine our metaphysics of how we treat persons in the first place. And then the implications of that are all over the place. Like you're bringing up, Darshan, the whole question of existing into the future inhabiting other entities... It's not just about can I exist as an uploaded brain? Because whatever the implications are about existing as an uploaded brain, they affect how we are now. So even if we haven't done the brain uploads or whatever, we still now have different moral frameworks for the normal you and me embodied in flesh. You see what I'm saying? So like...

Darshan: Repeat this example for me. I'm sorry. I feel like I didn't follow this one.

Peter: Okay. Let me go back to the [inaudible 00:25:30]. We have these metaphysical questions of what it means for a person to continue, right?

Darshan: Sure.

Peter: And we had these options like you're essentially a embodied organic human with the right kind of history or you're a embodied mind or you're disembodied mind in data.

Darshan: Right.

Peter: So here, a few options. And then one of your questions, which is a great one is, "Well, what would it really matter if it turns out that I'm a disembodied mind and there could be a thousand of me because I can replicate that disembodied mind?

Darshan: Right.

Peter: Well, what it matters is if what makes you you, which is your mind, can exist at a thousand different, distinct entities...

Darshan: Right.

Peter: ... Then we have to really revisit how we understand ourselves now, in the sense of our basic assumptions about what human beings are currently as these embodied things that have forever been distinct because of spatial parameters and the [crosstalk 00:27:00] Go ahead.

Darshan: Go ahead. No, to me, I don't fully understand the implications because I'm now mixing physics with bioethics, which obviously wasn't complicated enough. The one thing I keep hearing about is the parallel worlds theory. That all decisions at all times could have been made a different way and there are multiple universes where those alternative decisions were made. Therefore, by definition, I exist in infinity basically. There are multiple versions of me across different timelines.

Peter: Yeah.

Darshan: Is that the same thing? Or is that different?

Peter: It's another way of approaching the same thing. Like you said, at any given point, in any given decision... It's actually any given change, it's not even necessarily decisions. I guess the best way to imagine this is the way you said it, which is you have literally another world in which you exist, but having done otherwise. And this goes for every possibility. One, this creates a structure of the world that makes us rethink morality, because if every other option exists and functions... And it's not that classical framework of free will, which is, we chose not to do the thing... So imagine the you that's talking to me right now. That you... Are you this you in virtue of decisions you made or in virtue of decisions that parallel Darshans made? That you were the result of not being the decision the other Darshan made?

Darshan: How would you know who made that decision though?

Peter: I think this structure gets rid of decisions.

Darshan: Right.

Peter: You know what I mean? And that's why it fundamentally changes how we think of morality. Because culpability and praiseworthiness are grounded in the assumptions that we make decisions. So you get rid of decisions... This is why whatever your view is of the person and of the universe and of worlds, we still have to reconcile that with the fundamental frameworks of morality.

Even going back to clinical trials...

Darshan: Thank you for pulling it back, by the way. [inaudible 00:29:57]

Peter: Yeah. I think there's going to be a handful of listeners like, "What just... What direction did we just go?" Going back to clinical trials, if it turns out that all the possibilities are actually realized in other worlds, then there is a world where we continue to try these clinical trials on a corpse and then another world where we didn't and then all the outcomes are as real as the other outcome. So where is the decision in all this? [crosstalk 00:30:42] Yeah. That's why it really makes the fundamental frameworks for... These questions that we find to be very, very important, it makes you revisit them.

Darshan: The only way to stop this is to tell physicists not to do any more exploration because we just simply cannot handle the more opportunities and more questions that pop out of this. That's the only [inaudible 00:31:09].

Peter: So let's say we just have a pretty straightforward framework of people... Kind of the framework that [inaudible 00:31:21] operates under right now, which is when people die, they're not going to be reanimated. When people die, unless it's very explicit, we're not going to factor in treatment of the corpse with afterlife consideration. Overtly. For example, Jehovah's Witness or something, or Judaism, or Catholicism, there's certain things you can't do to a corpse. But say we have the basic framework of when someone dies whatever we do to that corpse is not necessarily what we do to that person. And that is...

Darshan: Can I stop you for a second?

Peter: Yeah.

Darshan: I'm Hindu by religion and in Hinduism, the idea is that you're reincarnated and that you have karmic flow, if you will, for lack of a better term. Here's my question. If you don't let my body get cremated or whatever, because we've come up with a new philosophical paradigm, does that prevent me from going down and having karmic flow? And my rights [inaudible 00:32:41]?

Peter: Yeah. I think we have all sorts of options for people's wishes about their corpse after death. And we leave that open. But the baseline is, unless you say what you wish to do with your corpse...

Darshan: Right.

Peter: Some people are opposed to cremation, some people are... Like in principle.

Darshan: [inaudible 00:33:12].

Peter: Yeah. Medicine operates with a neutrality about this, which is the baseline being when someone dies, the treatment of the corpse is not the treatment of the person themselves. So you respect a corpse in virtue of the person that was once there, but it's not the treatment of the person. So...

Darshan: What I hear you saying then is I don't have a right in saying no to potential treatments or clinical trials on me after my own death.

Peter: Yeah, I haven't really made that jump yet. It's just that if you didn't have the right or did have the right, it wouldn't be exactly identical to the kinds of rights you'd claim when you're living in your body or when you are a living body. I'll give you a quick example.

Say there's a pandemic or something like this and we think that you have gotten this infection and then you've passed away from it.

Darshan: Right.

Peter: We couldn't cut you open against your will and check to see if you have this infection, if say, the only way you could do it is cut somebody open or whatever.

Darshan: You couldn't?

Peter: Well, maybe you could, but it would be overriding a different set of things and if you die and we perform an autopsy against your will. And this happens like, "We're going to do this." So it seems like different things are at stake after death and before death. And the argument people make is, "Okay, so maybe it's not you that we're dealing with when we deal with a corpse, but we're dealing with property or an estate, so to speak."

Darshan: Right, right.

Peter: Something that survives you. That is why I brought up the trust earlier with the Barnes things, because it's like the corpse seems to have a set of rights that are more like property.

Darshan: Right.

Peter: And actually legally, I think there's a lot of parallel with that. You would know better than I would.

Darshan: I honestly have not looked at the legal rights of corpses. So...

Peter: Yeah. But it's interesting. For example, there's both ethical and legal prohibitions against treating corpses certain ways. What is the grounding? It's not that you're making someone's life worse or making someone's wellbeing drop. It's that we ought to respect corpses for what they once were, but better said, for what they represent. And again, it's a different set of underlying ethical principles. It's kind of like you treat a flag in a certain way. Not because it is the country, but because it represents the country. So...

Darshan: Is my body just a flag for my mind?

Peter: Yeah. People make that argument and then it's... Yeah, [crosstalk 00:37:14] go ahead.

Darshan: I have to cut it short because I feel like we're going to start having listeners just go, "This could just literally go on for days."

Peter: It really could. Okay, yeah. Definitely stop us.

Darshan: What I'd love to do is have you on again in a little bit and continue one or more of these conversations. Would you be able to do that?

Peter: Yeah, totally. I'd be down, for sure. I'll try to keep us a little more trained on the initial question next time. But some good stuff came out of this.

Darshan: This was the best conversation I've had in a long, long time.

Peter: Awesome. Likewise. It was a lot of fun, man.

Darshan: A pleasure having you on. And again, you work at Rutgers, so if people want to go take the class, sign up for Peter Koch's class, unless he doesn't want to take any more students.

Peter: Villanova, Villanova. But there's some really good philosophers at Rutgers actually. So...

Darshan: Yeah. So this is going to be awesome. I'm looking forward to having you on. By the way, did I say Rutgers or...?

Peter: I thought you did. It's all right. Don't worry about it.

Darshan: Villanova, right?

Peter: Yep, yep. Villanova. You're good.

Darshan: [inaudible 00:38:19] and she went, "Villanova." I was like, "What did I say?" Villanova. But this was awesome and we'll be in touch soon.

Peter: Yeah, definitely. Take care. Thank you.

Darshan: Take care.

Narrator: This is the DarshanTalks Podcast. Regulatory guy, irregular podcast, with host Darshan Kulkarni. You can find the show on Twitter at @darshantalks or the show's website at darshantalks.com.

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