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No Easy Answers in Bioethics Podcast

Organ Donation Models: Eijkholt and Fleck - Episode 8

April 6, 2018 Marleen Eijkholt photoLeonard Fleck photo

What kinds of organ donation models exist around the world, and how effective are those models? This episode on organ donation models features Center Assistant Professor Dr. Marleen Eijkholt and Center Professor Dr. Len Fleck. Combining their clinical ethics and health policy expertise, they sat down together to discuss ethical issues within current organ donation models, stemming from recent legislation passed in the Netherlands to implement an opt-out system of organ donation. Drs. Fleck and Eijkholt discuss positive and negative aspects of opt-out and opt-in systems, also drawing from other countries around the world. Additionally they discuss reasons why individuals may choose not to be organ donors, and the types of situations that can emerge at the bedside when grieving individuals do not want their loved one’s organs to be donated.

Listen now on H-Net

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.

Episode Transcript

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. Today’s episode features Center faculty members Leonard Fleck and Marleen Eijkholt. They sat down together to discuss ethical issues within current organ donation models, stemming from the recent legislation passed in the Netherlands to implement an opt-out system of organ donation. Drs. Fleck and Eijkholt discuss opt-out and opt-in systems, also drawing from other countries around the world. They also discuss reasons why individuals may choose not to be organ donors, and the types of situations that can emerge at the bedside when grieving individuals do not want their loved one’s organs to be donated.

Len Fleck: Hello everyone, I'm Len Fleck from the Center for Ethics here at Michigan State University, and I'd like to introduce Marleen.

Marleen Eijkholt: I'm Marleen Eijkholt, I am part of the Center for Ethics and Humanities in the Life Sciences too. Normally I'm located in Grand Rapids, and I'm an assistant professor of clinical neuroethics. And I'm sitting here with Dr. Fleck, who just introduced himself, the reason being is that, you can hear in my accent, I'm not from here. I was originally born in the Netherlands, and a couple of weeks ago the Netherlands introduced a change in the organ donation system. And currently we have an opt-in system, and the legislator adopted the legislation to move to an opt-out system. And this legislation will be fully implemented and introduced only in 2020, but talking about this change in legislation with Dr. Fleck, we came from quite some different perspectives. And I think we, yeah, we're, we'd like to talk a little bit about opt-in, opt-out, organ procurement systems and so forth. And what I found very interesting is that, and I don't want to put words in your mouth, Len, or Dr. Fleck, what's the best way of talking to you, but, um, it sounded like you thought that the opt-out was a pretty good idea, and I had a little bit more reservations about this. And I think we're both pretty rational and reasonable people, so it sounds like, yeah there isn't a uniform agreement on what is the best system for getting organs. So maybe should start, and why should we get organs in the first place, Len?

LF: Well, the biggest problem of course, is that right now in the United States there are about 140,000 people who are on waiting lists for major organ transplants. So we're talking about heart transplants, lung transplants, liver, pancreas, kidneys for the most part. Kidneys would be the largest single number, where there's a need, and as things are right now there's about 8,000 individuals who are on that transplant list who will die each year for lack of an organ transplant. And so this raises the question of well, are we doing enough by way of securing transplantable organs? And so we've already mentioned that there's this difference between an opt-in approach to securing transplantable organs, and an opt-out approach. And basically, just so everyone understands the difference, the opt-in approach is what we have in the United States. That essentially means that individuals would, for example, have to sign a driver’s license or some other document like that, something very simple, in effect saying, “I'm willing to be an organ donor. If I end up being in serious automobile accident or suffering some other kind of profound brain injury that would leave me in what is colloquially referred to as a brain dead state, then I'd be willing to donate my organs to others who might need them.” The problem with opt-in is that even though roughly 80 or 90 percent of Americans say they would be willing to donate their organs, in fact roughly about 40 percent of Americans have actually signed a driver’s license saying that they are available as an organ donor. And without signing anything, if they were to end up in that situation then it would be up to a family member or some other decision maker such as that to actually make a decision on behalf of that individual. Opt-out is the opposite. And what that means in practice is that individuals-- the assumption is that all of us are willing to be organ donors, perhaps in part because if we had the need to be an organ recipient, we would want to know that there were organs available to save our lives. And with the opt-out system, if I have some sort of serious reservation about being willing to donate organs, well I would have the right to sign a document, back of my driver’s license or something like that, saying that I don't want to donate my organs for whatever reason. You don't have to give a reason, you just have to say, “I don't want to donate my organs for any reason at all.” Now, the issue is, I mean there's an empirical question here, how effective are these systems, and in Europe a number of countries have adopted the opt-out system. It has led to some increase in supply of transplantable organs. And that increases seems to be somewhere between 5 and 25 percent, it varies a lot. But obviously as you and I will discuss, there are ethics issues that might be raised with regard to making a choice here. Why do you think opt-in is the better way to go?

ME: Well, thank you for, you know, explaining these models. And just to add one little part, so we're talking about models that are available to increase the amount of organs available, and of course there is also the, a model in which you could sell your organs, right. And some, like Iran has a regulated market, there are many countries out-- well there are some countries out in the world where illegal sales of organs is also available. But we're not talking about these countries. So your question is really why do I think that an opt-out model is problematic or an opt-in model is better. I find the whole question very interesting. So you mentioned a couple of countries in Europe have opt-out models and they have seen an increase in availability of organs. I think there are a couple of problems with an opt-out model. And one of the major things that I'm thinking about is the presumption that organs are basically property of everyone. So the idea is if you die, the basic presumption is that you give up your organs. And that, yeah, that therefore the organs are sort of property of everyone unless you say, "I don't want to give up my organs." You know, there is a presumption that they are shared material. And I feel that that is infringing on an assumption that my body parts are mine. And I'm not saying that this is necessarily unjustified, but I do think that there is a little bit of a hurdle and an obstacle that we need to really be more explicit about, that, what it means to give up your organs. So, in the Netherlands when they, you know the legislative history so far, it has been quite a struggle because of individuals who are saying on the one hand, you know, from a point of view of solidarity and shared resources access to healthcare, we should have an opt-out model. But on the other hand there are people who are saying well, if your body is yours, why should we automatically give them up? And come from the perspective that you have to opt-out instead of opt-in. So one of the premises here as well is that systems switch to an opt-out system because they feel that the education fails in an opt-in system. So the idea is that everyone's organs are their own, and if we can, as long as we can identify and educate people enough that giving up your organs is a good enough thing, then people would opt-in. But then the premise is that people are pretty lazy, and therefore not signing up, or maybe that they cannot be nudged strongly enough, but I believe that this is somewhat of a false assumption because it presumes that every rational person wants to give up their organs. And I don't think that that is necessarily, should necessarily be the case.

LF: Okay, now first of all I want to be careful to say that I am a strong supporter of respect for patient autonomy, and so under an opt-in system obviously individuals have to make an autonomous choice to sign their driver’s license and say, in effect, “I'm willing to give up my organs.” But under an opt-out system, it isn't the case that the state can simply take your organs, so to speak, against your will. It's still an autonomous system, it's just that the choice that somebody has to make is the choice to exit the system rather than to be included in the system. And so the burden of making that choice is placed upon those individuals who for whatever reason just strongly feel that they don't want to be organ donors, okay? So in that respect, the two systems are both, to my mind, respectful of the autonomy of those individuals. Now here's where I see a problem that I think we need to talk about, and that many people may not be aware of. Even when individuals have signed the back of their driver’s license and said, “I want to be an organ donor,” it's still common practice, typically done, that no one is actually, no physician, no transplant team is going to take those organs without first talking to family members or somebody who is a representative of that patient, to in effect get their permission to take those organs. Now, I kind of find that problematic because it seems to me that if we're about respecting patient autonomy, and if an individual has said, “I'm willing to donate my organs,” then my family should not be willing, or should not have permission to veto the choice that I've made.

ME: Yeah that's an interesting question. So I think what you're saying is that actually neither the opt-in system or the opt-out system are often pure, in a sense of a pure opt-out, pure opt-in. So in a lot of these models we have some family factor that plays into, um, into the system. So in an opt-in system, even if I, for example—and I am an organ donor—I have opted in, imagine my mom would say after, you know, if I would be lying on the table declared dead, my mom would say, “Marleen signed the form but she actually said she doesn't longer want to donate, and I don't think that she wanted to donate.” Then my mom gets some power in an opt-in system. In an opt-out system it can be the same thing. So I, for example, have not opted out, but my mother says, “Marleen didn't want to donate her organs,” then the providers would say well we'll follow the mother. And I believe that you're saying that that is somewhat problematic, am I understanding that?

LF: Yeah, yes that's correct. I, it seems problematic to me because in some sense it's going against the will that I've expressed. Now I understand of course people can change their minds, and you know we sign our driver’s licenses here, at least in the state of Michigan, like every four years or so, and so each time you would have an opportunity to make a different choice if you chose to make a different choice. In theory I suppose individuals could change their minds during that four-year interval, and if so it seems to me it would then be their responsibility to communicate that fact to family members so should they end up in a automobile or motorcycle accident or suffer some kind of profound head injury that would put them in that situation, family would know, yep, even though he signed his driver’s license, in fact he indicated to us just a couple years ago that he thought that that wasn't such a great idea, and he felt awkward or ashamed of having to not sign it in front of somebody at the driver’s license office. And so he signed it under a kind of semi-coercion. Okay, I can understand that. But then it is their responsibility to communicate that to somebody who would then make those decisions.

ME: Yeah, I, it is a very interesting problem to think about because of course family objections might not just be because they thought I changed my mind. You can have all sorts of family situations be active in the clinical setting that I see as a clinical ethicist. For example, grief. So individuals say, oh, I'm not ready to let my loved one go, and that's why they don't want to donate their organs. As a little side note, a lot of people might not know that for donation after death by neurological criteria, so by brain death, actually they'll keep the body warm. And that might for some people be a very challenging thing to say goodbye to a loved one while their body is warm, and breathing, if you like, by the ventilator. So it might be that a family member says you know, no, I am too upset, you cannot take their organs without respecting my wishes. There might be other reasons. So for example the providers do not want to enter into a fight, for example, with my mom. So if my mom says I don't want you to take my organs, um, yes she is standing in the way of my autonomous wishes, but the provider might say, you know, I'm just going to do what Marleen's mother says because I don't want to enter a fight with her. I think that it's true that it means not respecting autonomy, but that is really from a perspective where autonomy is very individual-centered. And if you take like a more relational concept of autonomy in which actually it's not just the individual that matters, but the whole family that matters, you can still say it's acceptable for family members to override the wishes of an individual. Although it's of course far from ideal. What I think the most crucial point in these, in these complying with family wishes is, is that it supports somewhat of trust in the system. If you get a very upset, aggressive grieving family that doesn't want the individual to donate, and you're taking out their organs anyway, so you're kind of pushing out the family from the bedside and saying, listen, your loved one has taken, has signed up to the register, we're going to take it regardless of what you're saying, you kind of get to a struggle where individuals will lose trust in the system. So I think that this is one of the major concerns why opt-in or opt-out systems are not as hard-lined as we often take them to be. And I, to some extent, I feel that there is a very big value in maintaining public trust in the organ transplantation system. Which is another reason why I believe that an opt-out system wouldn't work everywhere. In the Netherlands it probably will work because there is a big trust between the healthcare professionals, the government, and the citizens, so very few people will doubt, I hope, that their organs will be taken out prematurely. So in that way the system of an opt-out system in the Netherlands and in most of Europe will likely work. Would I believe that it might not necessarily work here. But, so maintaining trust in the system I think is a big argument and it's probably also a big argument, yeah, for, you know, a softer opt-out or a softer opt-in system. So public trust for me is kind of a practical but also an important consideration. What do you think about trust, Len?

LF: Oh, I think that's important as well. Now there are some, one of the things, we haven't mentioned, for example, Spain. Spain is taken as a kind of prime example of a system that is working extraordinarily well. Technically they have an opt-out system, but it's a very soft kind of opt-out. So they will always have a conversation with the family, but apparently the conversations that they have are had what you might call very, very skillfully. And in such a way that they elicit the autonomous support for doing, or for taking those organs for transplantation purposes. In that sense they are both building trust and respecting the autonomy of that family. One of the issues that has sometimes been raises is that - and again this is a kind of an empirical question, there's some rough empirical research out there to support this, but the concern is that some number of, some family members who have said no, I won't allow for a transplant to take place, have had regrets after the fact. They sort of realized, you know, that was a kind of hasty decision. If I think about it very hard I realize that there were six or seven other people whose lives could have been saved had I been willing to donate the organs of my loved one here. And I just, I acted on too emotional a basis, I didn't really think that through, I'm really sorry about that. And so that's one of the sort of side effects that can happen if individuals respond, in what is a crisis situation, too emotionally. So apparently the Spanish are very good at addressing the kind of emotional response that might result in a negative choice by a family. And getting them to think about that somewhat more carefully and understand what the need is and why it's important that they consider their choices very, very carefully.

ME: So just to pick up on that, I think it's um, that comment is not necessarily related to an opt-in or an opt-out system. So it's in both systems. You know where you allow family members to override the patient's or the deceased person's wishes. When I left the Netherlands we talked a lot about Spain, and the success of Spain. And since then, a lot of, a lot more countries in Europe have adopted the opt-out system. And what is interesting to note is that back in the days we always said, actually the success of the Spain model depends on these coordinators and these communicators. And actually empirically that has been shown to be the case. So in some countries, and I cannot completely remember which one, but I think, and these are not European, but Chile and Brazil chose to go to an opt-out system and then actually there was no increase in organs because of the family vetoes. And I think there is a couple of countries in Europe too that decided to go for an opt-out system, but didn't have these communicators, these navigators, and therefore it didn't lead to an increase in available organs. So it's interesting to think that it seems not the opt-out system that leads to an increase therefore, it seems that the communicators and these bedside navigators lead to the actual increase in organs. So in return, coming back to our question at the outset, will an opt-out system lead to more available organs, if it purely depends on these communicators, then why can you not have these communicators in an opt-in system? Like at the bedside. And I'm wondering what you think about that?

LF: That, I, you're probably right about that, and that that's the most critical element in securing an increased supply of transplantable organs. There are some other options though, and since we're talking about other countries in the world I did want to mention Israel did one thing that I thought was kind of interesting, and I'd actually be inclined to endorse it, I don't know if you would endorse it. But what Israel decided to say was that if you wanted to be considered for an organ transplant, should that need arise at some future point in your life—ten years from now, twenty years from now, thirty years from now—then, it had to be the case that you agreed ahead of time that you would also be willing to be an organ donor. Otherwise, and the whole idea is, you know, this is what reciprocity is all about. This is what fair treatment. If I expect you to donate the organs of your loved one to save my life, then I ought to be willing to either make my own organs available for donation or to agree to donate the organs of a loved one for the same purpose. And so that seems like something that is morally reasonable. The result was, and this was very widely publicized, and of course Israel is a small country, but within ten weeks they had increased by seven or eightfold, the number of individuals who signed up be organ donors. So that seemed like a very effective way, and again that's respectful of autonomy, it's, and it seems like it's also it's more just, more fair than the alternative. Though I realize there would be a kind of awkwardness associated with someone actually having a need for an organ transplant and checking to find that they had never agreed to be an organ donor. And having in effect to say to them, well we're just going to let you die then. Now it doesn't actually work that way in Israel, but the way it actually works is that if two people are equally available to be an organ recipient, and one of them in the past has agreed to be an organ donor, they would get priority over an individual who had not agreed in the past to be an organ donor.

ME: And in a way, when you're alluding to that, I'm thinking about the example that I read a couple, may a year ago or two years ago, about, here in the U.S., a grandfather signing up to give an organ because his grandson needed a kidney in the future. So, there are variations of those systems available. And I'm, I probably should have looked it up, but, so there are systems of paired and chain donation available in the U.S. I believe that the system is somewhat problematic because some individuals for their religious or cultural beliefs cannot sign up, right, to be an organ donor. Does this exclude this from receiving an organ donor. And then, in the paired and the chain donation, it always depends on your social connectedness, right? And so it would exclude a hermit that doesn't have any relatives to sign up for, right. And so I think both these systems, you know, suppose some homogeneity of individuals, some reciprocity that basically on which the organ systems, you know, shouldn't fully rely. So I'm not sure that these system are, are as unproblematic as you say, because they make certain moral presumptions, and they make certain personal assumptions on your personal things. But then-- okay, you want to say something.

LF: Okay, so maybe what we have to say is that, we can't hope for something like perfect justice or perfect respect for autonomy. We have to settle for non-ideal justice or imperfect justice, and, um, a bit of a compromise with respect to personal autonomy and so on. But that's the price we may have to pay in order to secure an increase in the number of organs that are available for transplant purposes in order to save the lives of individuals that in fact are salvageable.

ME: Let me, let me put you a little bit more on the spot here, Len. So if we're talking about, you know, we want to achieve a system that generates more organs and a system that is based on somewhat of an autonomy, so how, what do you think about the sales of organs then?

LF: Oh, well actually I would be opposed to the sale of organs. I'd be opposed primarily for moral reasons. The individuals who would be motivated to sell a kidney or to sell a portion of their liver and to risk the surgery, the morbidity, and risk the mortality associated with that are individuals who would be relatively poor, less well-off, and so they'd be vulnerable to exploitation. In general, it shouldn't be the case that those who are financially well-off would be able in effect to buy an organ to gain additional life, when it would be the case that an individual who is less financially well-off who had an equal medical need would not have the ability to obtain an organ in that way. Would have to rely upon some less reliable system.

ME: So I think that, I hope you don't mind me challenging you here, that that presumes a certain system of, an unregulated sale of organs. While, for example, in Iran, I alluded to that, there is a regulated system of organ sales. So, you know what you're gonna get, you know, for example, $3000 for an organ, and it's actually the government who sells, who can then redistribute them. The organ is just, you know, you just pay $3000, basically anyone can purchase it because it doesn't, it's not that $10,000 will offer you a better kidney than a $3000 one.

LF: Would there be some individuals who could not afford the $3000?

ME: That’s-

LF: I mean given, I assume if you're using a number there relative to the standard to living in Iran, would be equivalent to $30,000 or something in the United States. Or maybe that's too high.

ME: Yeah, you're catching me in something that I'm not even fully aware of. I don't know what the regulated market means. And if in Iran, for example, individuals have for healthcare insurance, for example. Because, I mean, we, I named the money $3000 for a kidney, but basically here in the system, probably a kidney costs $3000, right. If you look at the value of it. But it's just being taken care of by insurance. So it's paid for by insurance. Imagine that in Iran the people have healthcare insurance that can pay $3000, you know. If it just about the availability of organs, yeah, if people are willing to give up this organ, for example, in restitution for some financial compensation, you now, I don't know if there is, if it's very different. If we're basing our argument around autonomy.

LF: You know, who are the people who are willing to give up an organ for any kind of financial compensation? I wouldn't. In part because I'm very securely in the middle-class and so I would not want to have to take on the medical risk associated with surgery like that for purposes of making a few dollars that wouldn't mean that much to me. It would be different if it was somebody that I cared a lot about, and who was desperate and for whom I could provide that organ. Then I'd be willing to take the risk, but not for money. I just...

ME: Right. And as we're talking I realize we're actually confusing multiple systems. So an opt-out and an opt-in system refers to, you know, when we're talking about that, refers to deceased donation. While we are talking about living kidney donation, right.

LF: Yes.

ME: And who is willing to give that up. So in a system of, you know, an opt-out system, or even in an opt-in system, I would not give up my organs while being alive. So, I think it's necessary to distinguish that. So the argument about, you know, who would sell their organs, and, maybe I'm poor, but I can gain money, right? You know, why should I not be allowed to get some extra money from this extra kidney that I don't need. Right? Which is the idea of, you know, privileged people say that I'm being exploited when I'm selling my kidney, well I just want to give some money, right? I just want to get some money, why should I not be allowed to sell my body. Right? So, um, so that's an argument against, you know, or to counter your concern about who would give up their organs, it's just the people who are vulnerable. Maybe, but then, why not, if I have a spare one, right. But I think maybe we should go back to the system after, you know, after death, and, you know, what happens there? And if, if that's, you know, vulnerable to exploitation, etc. Yeah.

LF: That would probably be less vulnerable to exploitation, and a number of policy makers in the United States have suggested that state governments or the federal government could provide tax incentives of one kind or another to encourage donation. And, uh, and this is donating the organs of somebody who is, who has already been declared dead. And so there is, the issue of exploitation then seems to go away. I probably would have less in the way of objection to that sort of system. We could ask other questions about whether that's a good use of resources and so on. One of the problems that, we can't really go into any detail on this, but the basic issue is if we were to get in the United States, say, 8,000 more organs in a year, would we have then saved all the lives that needed to be saved? And the short answer is no. Because we right now control access to the list of individuals who are put, who are available or who are in need of having a major organ transplantation. If we were more liberal in allowing individuals to access that list, then the need would obviously increase. And so the actual need for hearts, and livers, and so on is many, many times greater than the simple loss of those 8,000 lives that I mentioned at the beginning of this discussion.

ME: Um, I don't know how to wrap it up, Len. It sounds like there is many argument that we could use, you know, to support an opt-out system. And also to use against an opt-out system and for an opt-in system. And these arguments, you know, range from have we tried everything, what are good-- what are some other means to increase the available organ. And does it mean that, a presumption that your organs are, you know, should automatically go to other people in case they haven't opted out. Is that really, should that be the presumption. Which is something that I struggle with. To really maybe wrap it up is one last thing that I want to say. Um, our organ donation debate is surrounded by language, even, you know, referencing donation, etc. It's a very fluffy wonderful language. And I, I do think that we are in some way persuaded by the language of gift and the language of donation. And the language of wonderfulness. And to me, that is somewhat interesting. Um, when I'm reading again the parliamentary history up to the change in legislation in the Netherlands, it is all about donation. And when I studied a little bit cross-culturally, you see that the language of donation and gift is very much tied to some Christian Western values. And, for example, some other cultures and religions you don't speak of organ donation, you speak of organ harvesting. And these are very harsh terms that we don't like to embrace. And, yeah, I'm just thinking that we haven't really explored all the arguments around, or all the arguments and the language around organ donation yet. I think it's a fascinating discussion that we can continue to have.

LF: And it's a discussion that needs to occur in the, with the public. And it's both a moral and public policy discussion. And with that, thank you Marleen for your contributions today.

ME: Thank you Len.

LM: Thank you for joining us today on No Easy Answers in Bioethics. Please visit us online at bioethics.msu.edu, and follow us on Twitter @MSUbioethics. This episode of No Easy Answers in Bioethics was produced and edited by Liz McDaniel.

No Easy Answers in Bioethics Podcast

‘Imaging and Imagining Illness’: Devan and Darian Stahl - Episode 7

March 8, 2018 Devan Stahl photoDarian Stahl photo - Photo Credit: © Concordia University/ Lisa Graves

The recently released book Imaging and Imagining Illness: Becoming Whole in a Broken Body began as a collaboration between sisters Devan Stahl, Assistant Professor in the Center for Ethics and Humanities in the Life Sciences and the Department of Pediatrics and Human Development, and Darian Goldin Stahl, artist and printmaker. The edited volume examines the impact of medical imaging technologies on patients and our wider culture. In this episode, guests Devan and Darian share the personal origins of their collaboration. They discuss Darian’s artistic process, how audiences have reacted to the artwork, and how they came to invite other scholars to build on their work. By and large, Devan and Darian’s story delves into the intersection of art, illness, disability, and self-identity.

Book cover: Imaging and Imagining Illness

Listen now on H-Net

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.
Darian Goldin Stahl Photo Credit: © Concordia University/ Lisa Graves.

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Episode Transcript

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. Today’s episode focuses on the intersection of art, illness, disability, and self-identity. The recently released book 'Imaging and Imagining Illness: Becoming Whole in a Broken Body' began as a collaboration between sisters Devan Stahl, Assistant Professor in the Center for Ethics and Humanities in the Life Sciences and the Department of Pediatrics and Human Development, and Darian Goldin Stahl, artist and printmaker. The edited volume examines the impact of medical imaging technologies on patients and our wider culture. In this episode, guests Devan and Darian share the personal origins of their collaboration. They discuss Darian’s artistic process, how audiences have reacted to the artwork, and how they came to invite other scholars to build on their work.

Devan Stahl: Hello my name Devan Stahl and I work here at the Center for Ethics and Humanities in the Life Sciences, as an Assistant Professor of clinical ethics.

Darian Goldin Stahl: And I am Darian Goldin Stahl and I hold an MFA in Printmaking from the University of Alberta in Canada, and I am currently a Humanities PhD student at Concordia University in Montreal.

Devan: So, you might notice that our voices sound similar, and this is because we are sisters.

Darian: Yeah you might have noticed that we have the exact same last name.

Devan: Another great signal that we might be related. So today we’re going to let you know who is talking. I, Devan, will be speaking from the patient experience, and Darian will be speaking as an artist. If you get confused, I say just sit back and take in our melodious voices. [Both laugh] So today we’re gonna talk about a book that Darian and I wrote, called ‘Imaging and Imagining Illness’ that has recently been released from Cascade Books and you can find on Amazon! ‘Imaging and Imagining Illness’ is an edited volume that examines the impact of medical imaging technologies on patients and our wider culture. This book began as a collaborative project between Darian and myself about five years ago. Does that sound right Darian?

Darian: Yeah that sounds right. I knew that I wanted to collaborate with you as the focus of my MFA research in visualizing disease starting in 2012-2013.

Devan: And your MFA is your Master’s of Fine Art, is that right?

Darian: That’s right.

Devan: Okay, about 10 years ago I was diagnosed with Multiple Sclerosis or MS, and my physician diagnosed me in part by looking at some MRIs. Because MS affects the nerve connections in my body, every year or so I get hundreds of images of my brain and spine, so that my doctors can monitor my disease progression. And so now I associate my disease with these particular images. Now if you’ve never had an MRI, they can be, well, a bit of a nightmare. When I get MRIs, technicians strap down my head, they put an IV in my arm, so that they can put dye into my blood stream, and the sessions can last about three hours. Now the tube they put you in is super narrow, and it’s very loud in kind of this arrhythmic way, so there is really no way to fall asleep, and you have to be very careful not to move or they have to start all over again. Needless to say, this is not the most enjoyable experience. And as I described what it was like to have MS and what it was like to get these MRIs and see all these images of my body, Darian and I found that we had this kind of odd scholarly interest that we shared. We were both really interested in Renaissance anatomical textbooks. Might sound like a bit of a non sequitur but we’ll get to how that’s involved in a second. So at the time I was teaching a course at St. Louis University called “Freaks and the Medical Body,” which examines the ways in which medicine has participated in the freak show, and how our understanding of the normal body and the abnormal body has changed over time. I showed my class images from Vesalius’ classic text “de Fabrica,” and compared these images of human bodies to the textbooks we have today and the images we see from medical imagining technologies, such as MRIs.

Darian: And while Devan was teaching this course, a couple states away at this exact same time I was earning my Bachelor’s of Fine Arts in printmaking at Indiana University in Bloomington. And my own interests in, maybe, dubious depictions of the body began when I took a course on the History of Anatomy. I became fascinated by the deeply held misconceptions of our anatomies, like how Galen depicted the human body with a five-lobed liver, or the belief that there was an extra organ at the base of our skull, called the rete mirabile, which were both illustrated in anatomy textbooks well into the Renaissance. These misconceptions of the human body were held for so long, because it was assumed we shared more anatomy in common with other mammals. Whereas barn animals could easily be dissected, and it was extremely rare to dissect humans until the late Renaissance.
As Devan mentioned, Vesalius’ illustrations of anatomy were truly groundbreaking, because he performed human dissections himself and used first-hand observation to correct false anatomical beliefs. He also rendered the body in a completely new and elegant manner. Before the photographic breakthroughs of the late 19th century, anatomists relied on printmakers to illustrate how the body worked. Because, of course, all of these images of anatomy had to be hand-carved into woodblocks, inked up, pressed into paper, and bound into pages in order to disseminated. The evolution of craft and collaborative relationship between anatomists and printmakers is perhaps best evident in Vesalius and Stephan von Kalkar’s anatomy tome, “de Fabrica.” In these images of the body, the cadaver is not lying down, but almost dancing across the Italian countryside. Well, until the figure’s muscles are so dissected that and he has to prop himself up against a pillar in order to keep from crumbling to the ground. I loved how the cadaver felt as if he were still alive and teaching us about his inner body. This union of function and aesthetics was so intriguing to me because of the stark contrast to how we depict the body in medical images today, which are unmoving, generic, anonymous, and completely objectified. Vesalius and Kalkar’s prints made me reconsider the purpose of anatomical images.

Devan: Darian I love how you describe that as the body sort of dancing because I hadn't thought of it quite that way before. If- I encourage people to look at these images, but they're always like in a field or in the city and they're, you know, maybe his hand is raised up, but yeah they're sort of, and they're meant to be pushed together right? So in the textbook maybe they're sort of separated but when you put them all together he's sort of twirling around in these sort of different landscapes.

Darian: Yeah there is, it's called an accordion file, and you can kind of imagine this, just folding of a very long sheet of paper into a zig-zag and you, it fits into the book and you can also pull it out, and that's when you can see all of the figures side-by-side and it is this twirling, the hands are going up into the air, and pointing above and below, and it's a beautiful way to depict the body.

Devan: Yeah and so you compare that to maybe like ‘Gray's Anatomy’ which is you know it's sort of this big move toward you know you just want to see the heart on a page sort of drawn in its simplest terms with kind of the arrows pointing to it which is a very different way of depicting the body than that sort of dancing across the Italian country scape.

Darian: Yeah they were built meant to be educational, but somehow there was this gap between subjectivity and objectivity.

Devan: Yeah, yeah so the pictures in ‘Gray's Anatomy’ are meant to be more objective, and objective means that you can't, you know, be dancing. Apparently dancing is quite subjective. [Both laugh]

Darian: Apparently.

Devan: Okay, so, so Darian and I began thinking, what if there was a way to depict the body in ways that were more like how those older artists depict them in textbooks? So, how could we recreate something of what Vesalius was doing? How could a medical image signal more about the human experience than a simple MRI or a scan could allow?

Darian: And this initial idea started my research into the body as a metaphorical vehicle for narrative, and how medical images can include context, movement, and atmosphere that tell us something more about the lived experiences of the patient, like her daily life living with chronic illness. The patient in this case of course being you, Devan. She began writing about her memories of being diagnosed, thinking ahead to an altered future, and the unease she felt with the unpredictability of her body. Then I began to depict these narratives visually.
And I had this breakthrough moment in the process of visualizing disease when Devan mailed me a CD of her MRI scans that she received from her doctor. This cache of medical scans moved all through her head, face, and body, but I couldn’t recognize Devan in a single image. I thought about what was missing in these pixelated, black and white images of anatomy, and I concluded that it was skin. I sought out the scans that perhaps held a clue to her identity, like the curve of the ear, or an impression of the cheek. But the scans sliced right through your face [both laugh] and the images became monstrous and completely unrecognizable. And I then decided to return flesh to these scans, in the hope of rehumanizing their anonymous qualities.

Devan: Was that the first time you ever thought of me as a monster? I am the older sister, so… [both laugh]

Darian: Maybe not, but… yeah it was quite horrifying especially going from maybe the front to the back where it’s going through the nose and all the teeth, and I just, I wanted to see the face and it wasn't there.

Devan: Right.

Darian: So in order to inflesh these scans again I discovered a way of kind of “scanning” my own skin, and then I would layer them with Devan’s MRI scans through the printmaking process. And after so much trial and error, I found that if I lightly dusted powdered charcoal over very smooth paper, and pressed my body into it, the oils of my skin and the weave of my clothes lifted the charcoal, and left a perfect negative impression of my body in the paper. It was kind of amazing to see the amount of clarity I was able to achieve with this technique. You could see the creases of my lips, the movement of my eye lashes, and even the copious amount hairs on my chin—which I wasn’t really aware of before this moment.

Devan: They’re very fine baby hairs.

Darian: [Laughs] Yeah, it was a bit of a surprise. So, after joining these skin scans with Devan’s MRI scans I was able to create a fully fleshed out figure. And then I placed this new figure in the context of the home. Maybe instead of dancing around the Italian countryside it made more sense for this depiction of Devan to be in the home as maybe the space where she has the time to contemplate living with disease. I depicted this figure at the foot of stairs or looking down narrow hallways imagining how her body might navigate these spaces in the future as her disease progresses. And I see this figure as symbolizing our collaborative process. Our scans have combined to form this new, kind of third figure that exists between us, who represents our goals to give context to the medicalized body.

Devan: Yeah, and you sort of literally press your flesh into those scans, so it's my brain or my spine and your sort of pressed flesh, so we become this one figure in your art.

Darian: Yeah. It wasn’t too difficult to line up, your scans and my body. I think the only thing I really had to do was make my- make the scans shorter. Because you’re very tall. [Laughs]

Devan: I am very tall, I’m a lot taller than my sister Darian. Yeah, so, and just a plug for Darian’s art, you should go check out her website, dariangoldinstahl.com. D-a-r-i-a-n-g-o-l-d-i-n-s-t-a-h-l.com. And she has all of the past exhibits that she’s done and lots of pictures, so you should check them out. It’s hard to convey exactly on a podcast. So folks should check it out.

Darian: Yeah, it is a visual medium.

Devan: It is a visual medium, that’s right. And, I've been to now a couple of exhibits with you where I've been able to sort of stand back and see people as they comment on your art and it seems like people really respond well to it. Would you say that?

Darian: Yes! I would say that the responses have been overwhelmingly positive, though it really does depend on who the audience is in that moment. I’ve found that caretakers have a very emotional response. I have tried to leave the figure that I portray in these prints very open, with little definite features, so that anyone is able to project their own experiences onto this image. And during my master’s program, my advisor began caretaking for her ill father. And when I first showed her this work, she was able to immediately identify with the images being shown. Even though the figure is portrayed as a woman, she felt the concern of moving her father up and down stairs and through the other domestic spaces of her home. You know, caretakers are often isolated and overworked, physically and emotionally. And I felt what I was doing in this moment was building a community in the gallery space that tries to combat this isolation. Another group that has a very different response is physicians. They are fascinated by my use of the scans, I think it's something that they see in their everyday lives completely transformed into a fine art piece, but they still try to read the scans. A member of my thesis committee was a neurologist, and she was concerned that the MRI scans weren’t portrayed clearly enough. It was almost a warning to me that I would receive criticism if my audience couldn’t see the lesions in Devan’s brain scans.

Devan: Which is pretty funny because I don't think anyone but a physician could possibly see that, right?

Darian: Right. And-

Devan: You have to be trained.

Darian: This is a thing that has never happened. Nobody has ever asked me to point out the lesions in the artwork. I use the scans as a greater metaphor for living with the disease, and I think the audience is able to, to feel that, and they’re not searching for the lesions.

Devan: Yeah but the physicians are, I remember at least once when we presented maybe at an academic conference and there's a physician in the audience, when we put up one of these scans they immediately know what my diagnosis is before we say anything about it. They can tell right away.

Darian: Really? I can’t tell at all. I don’t know, I’m not a technician or doctor.

Devan: Right, and you can sort of be trained. I mean enough physicians have helped me to see them, to see those spots, so I can now see them because I've been sort of trained by my physicians to see that. But it's not, it’s certainly not something you'd be able to tell without any kind of training.

Darian: Right. The lesions aren’t so huge, at least to my perspective, that I would see the scan and immediately know something was wrong, quite the opposite. They just look like a beautiful regular brain, Devan.

Devan: Oh, thanks Darian. [Laughter]

Darian: But, there have also been a few times where viewers find the images quite alienating, and maybe too charged and emotional to engage with at all. One gallery goer asked me why I would make art so sad, when art is supposed to make you feel happy. And others have asked me why I don’t include more, maybe, rainbow colors, and still others won’t talk with me at all about the work. I remember one time during my master’s I invited a professor into my studio for a critique, and he basically refused to talk about the work once he saw it. Maybe I hit a nerve with him, and he didn’t want to go there? I really couldn’t say, but I don’t think that this work is overly sad. I think of it as an honest portrayal of a very real possibility of impairment, and it deserves its own contemplative space.

Devan: Yeah, I also don't see your art as sad. I mean, some of the initial art was very black and white, but that's because the MRIs themselves are black and white and so it fit the theme. A lot of your more recent work does have a lot of those brighter colors in it, so that is somewhat of a change but, yeah it's not, it's only sad if you think that impairment itself is something to be sad about, which I don't, and I don't think you do either. So to me it's sort of it's celebrating like this fuller body and a fuller experience. Which is not sad. Which isn't to say it's not never- it, you know it might be sad sometimes, but that's certainly not the emotion that I associate with your art or with my disease.

Darian: Right. I feel the same way, I get why people might feel that way when they're looking at it, but I also think that they're bringing their own emotions to the table.

Devan: Right, art is sort of this reflective experience where people are, they bring as much to it as maybe they, maybe a lot more than you intended.

Darian: Exactly, and that's the beautiful aspect of art is that it has this multiplicity of interpretation, which is perfectly fine. [Laughter] That’s what I want people to come away with is how it fits and relates to their own experiences.

Devan: And what's so great about that, I love that word multiplicity because, kind of the idea initially was that these images have a single interpretation, right? They say something very particular, they say something that the physician is looking for, and you either have it or you don't. Whereas as the artist you're allowing for kind of a multiple interpretations of that image, a kind of multiplicity of all sorts of different subjectivities that can go into that, and that's very different than what it would be used for in the medical setting.

Darian: Yeah, it's a completely different language, but still drawing from the same core set of symbols, and I think that there's room for more subjectivity in the medical side of things it doesn't just have to be this singular purpose image. Maybe for a diagnosis, but to acknowledge that images are powerful and will have more than one effect to anyone that sees them.

Devan: Absolutely. So, Darian and I also began presenting our work together as I said at different medical conferences, at medical humanities conferences and bioethics conferences, and writing papers about this collaboration. And we began thinking, so if my narrative and Darian’s art can come together in this way, might other scholars from other disciplines also have something to offer our project? Darian sees my MRIs differently than my doctors do, and even than I do. So, could a philosopher, or a theologian, or a visual culture theorist also see them differently? And then we thought maybe we can invite these other scholars to read my narrative and Darian’s description of her art, and build on our work. So, in the- ‘Imaging Imagining Illness,’ this book we’re talking about, I begin this volume with a short pathography, which is an illness narrative describing some of my interactions with the medical community, and my initial diagnosis. I explain how I experience the process of MRI scans, interacting with various clinicians, and the influence my illness has on my self-identity.

Darian: In the next chapter, I give my own interpretation of Devan’s illness and bodily images through my fine art prints and artist statements. I add my own remembrance of her diagnosis and how it affected our family and then my artistic direction going forward.

Devan: Then Dr. Therese Jones reflects on my story and Darian’s art through the lens of the medical humanities. Dr. Jones picks up on the themes of liminality, pathography, and identity formation in illness.

Darian: Next Dr. Kirsten Ostherr’s chapter details the history of medical “technovision,” and the ways in which patients can use creative forms of expression to reclaim their body identities. Using the lens of visual culture and media studies, Dr. Ostherr describes how patients can disrupt the biomedicalization of life and empower themselves in the digital age.

Devan: Then the final two chapters reflect on all four of the previous chapters, adding additional layers of meaning and interpretation. Dr. Ellen Armour writes as a theologian interested in biopower and resistance. Dr. Armour’s chapter is concerned with how certain images and narratives can mirror or resist our modern ways of knowing and being in the world. And then Dr. Jeffrey Bishop, a physician and philosopher in bioethics, considers the power ontology of medicine, as well as patient empowerment and the dark gift of bodily frailty. Dr. Bishop emphasizes what’s gained in self-giving.

Darian: And we were also lucky enough to have Rosemarie Garland-Thomson write the foreword, in which she highlights the field of other women who create disability art. And on a personal level I had been studying Rosemarie’s writings for my dissertation, and she had quickly become an essential scholar for my research topics. So I was overjoyed, it was such an honor to have Rosemarie reflect on our collaboration, and to be grouped together with other incredible women working on the topics of disability. I had known these other artists Rosemarie discusses for years, when I was studying for my MFA thesis defense. Riva Lehrer out of Chicago, Laura Ferguson from New York City, and Katherine Sherwood in San Francisco are all my personal art stars. So to be considered in their orbit is a dream.

Devan: And well-deserved, Darian, I would say.

Darian: Thank you!

Devan: So what we end up with, in this volume is sort of a work that builds upon itself. The authors are reading the other authors and building on their ideas, and sometimes challenging them. And I conclude the book with some reflections on the themes that came up, including the power of biomedicine and how patients can resist it or submit to it, how medical imaging affects identity formation, and how patients like myself might be transformed through chronic illness but also through art.

Darian: The arc of the book traverses the MRI scan from idol to icon. At first the MRI confines and limits Devan and becomes the only way her doctor can see her, whereas my art helps to turn the MRI into an image that incorporates Devan’s reality.

Devan: Right, Darian’s art and these other multiple interpretations offered by the contributors turn an image that once felt very intimidating and alienating into an image that reflects more of who I am and may even change the way others see themselves.

Darian: As far as my own artwork, our book has given me a new perspective on the importance of flesh, which has since taken on an even more preeminent role in my printmaking practice. In her medical scans, Devan’s flesh is punctured and set aside. The labor in giving back this flesh that was lost in the pursuit of a diagnosis, is seen as a kind of transubstantiation for our other authors. Skin’s employment in shifting Devan’s scans from an image on a screen to real-life relation with flesh gives shelter, care, and identity to Devan’s internal anatomy. We hope that this process allows others to see their scans differently, and perhaps even inspires them to reclaim and re-present their own scans into a personal vision of identity.

Devan: So we’re very proud of the book, which again you can get from Wipf and Stock Publishers or from Amazon.com, and if you feel like it, and if you like the book you should feel free to add a review!

Darian: Yes, please give us a review, but only if it’s positive. [Laughter] If it’s negative don’t, just ignore that.

Devan: That’s right if you don’t like the book you can just keep that to yourself. [Laughter] Alright thanks Darian.

Darian: Thank you Devan. Thank you everybody else who is listening!

LM: Thank you for joining us today on No Easy Answers in Bioethics. Please visit us online at bioethics.msu.edu, and follow us on Twitter @MSUbioethics. This episode of No Easy Answers in Bioethics was produced and edited by Liz McDaniel.

No Easy Answers in Bioethics Podcast

Public Perception of Psychiatric Interventions: Cabrera, Bluhm, and McKenzie - Episode 5

January 11, 2018 Laura Cabrera photo Robyn Bluhm photoRachel McKenzie photo

This episode features Dr. Laura Cabrera, Assistant Professor in the Center for Ethics and Humanities in the Life Sciences and the Department of Translational Science & Molecular Medicine, Dr. Robyn Bluhm, Associate Professor in the Philosophy Department and Lyman Briggs College, and undergraduate research assistant Rachel McKenzie. Together at Michigan State University they have collaborated on research regarding psychiatric interventions, including pharmacological interventions as well as neurosurgery, like deep brain stimulation. In this episode they share some highlights from their internally-funded Science and Society at State project, which focused on the public perceptions of such psychiatric interventions.

Listen now on H-Net

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.

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Episode Transcript

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. Today’s guests are Center Assistant Professor Dr. Laura Cabrera, Dr. Robyn Bluhm of the Philosophy Department and Lyman Briggs College, and undergraduate research assistant Rachel McKenzie. Together they have collaborated on research regarding psychiatric interventions, including pharmacological interventions as well as neurosurgery, like deep brain stimulation. In this episode they share some highlights from their internally-funded project, which focused on the public perceptions of such psychiatric interventions.

Laura Cabrera: Hi! Hello I am Dr. Laura Cabrera and I am an Assistant Professor in neuroethics at the Center for Ethics and Humanities in the Life Sciences.

Robyn Bluhm: And I'm Robyn Bluhm. I'm an Associate Professor in the Department of Philosophy in Lyman Briggs College here at MSU.

Rachel McKenzie: I'm Rachel McKenzie. I'm a senior studying neuroscience.

LC: And we are here today to share with you exciting highlights from our ongoing research collaboration. So it all started at the end of 2015, when Dr. Bluhm and I got our Science and Society at State, also known as S3, internal grant here at MSU. And the grant or that project was looking at two psychiatric interventions. So we focused on psychopharmacology, and we focused on psychiatric neurosurgery. And we were looking in particular at issues of values and public attitudes around these interventions, both in the academic setting and in the general public. Now this was a perfect collaboration in a way, because Robyn has been interested in doing research in areas connected to RDoC and diagnosis of mental health. And I’ve been doing research in neuroethics, so this was a great way to combine our interests and expertise. And then the other big reason why we decided to focus on this, was because psychiatry in a way deals or rather raises a lot of ethical issues. So if you think about what is a psychiatric disorder? In general involves maladaptations related to mood, behavior, cognition and perceptions. And then who decides what is a psychiatric disorder, or when you see that a maladaptation is so concerning that it becomes a disorder and not just something that we can you know deal with and live with as a society. So just think of homosexuality a few years ago when it was considered a mental health disorder.

RB: Yeah and I mean one of the things about getting the S3 grant that was really nice is the grants are meant to support new collaborations. Particularly interdisciplinary collaborations, but it was also the first year for both of us at MSU so it was really nice to get a chance to meet each other and find that we had things in common. And then to get some support for getting a collaboration off the ground. So I'm actually going to talk a little bit about what we did in the year that we had S3 funding. First and most important we hired Rachel which has probably been the best decision that we've made about any collaborating. So once Rachel started working with us we did a literature review to identify articles in the medical and bioethics literature on the one hand and then in the media on the other hand and we developed a tool to code these articles to see what different issues were being raised. So we compared not just the academic professional academic literature but we, looking at the media stories wanting to get a sense of how the public felt about psychiatric interventions. So we coded, using the same tool, comments on media stories in newspapers and magazines online. That took a long time and we are still analyzing and writing up the data. So that was a large chunk of what we did during that year. And then the other thing that we did was we organized a one day workshop and this was in the fall of 2016, to bring together potential future collaborators and people with an interest in the topic, to present some of our pilot data and get feedback from them. So we included scholars and graduate students from the health sciences, the social sciences, humanities, medicine, and ended up having a really rich and productive discussion. We're going to talk a little bit next about three of the papers that came out of this pilot project.

LC: So the first paper was looking at the professional literature. And that was because that was the first data set that we finished coding. And there were some results that we expected but there were some that we just, we didn’t, which that’s what is nice about empirical research. So to start the technology that, the technologies that were discussed or the interventions. So if we look at the psychopharmacology literature. Things like Prozac, so antidepressants, or stimulants like Ritalin would be the two type of interventions that will be discussed the most. In the case of psychiatric neurosurgery, deep brain stimulation was by far the most discussed intervention.

RB: That was really interesting too because before we started working together I had no idea what deep brain stimulation was.

LC: Yeah. And that even though I've been looking at deep brain stimulation, this was the first time that I look at it from like a mental health, as used in mental health. Now for it those of you in the audience that might not know too much about what deep brain stimulation is. So deep brain stimulation is relatively new psychiatric neurosurgery intervention that has a long history, but the new form is recent, and is widely used in movement disorder such as Parkinson or Dystonia. And now it is mostly investigational for psychiatric disorders, even though it has a humanitarian device exemption for obsessive compulsive disorder. And what it, it’s basically two electrodes or one electrode implanted in deep nuclei in the brain, and it has a brain pacemaker or like a battery and that's why some people talk about deep brain stimulation as being a brain pacemaker. So kind of an analogy to a brain um, to a heart pacemaker. Okay so that was a technology that was discussed the most. Now, another thing that was interesting to see from that data set was a type of advantages and disadvantages that were discussed. Percentally the neurosurgical literature had more discussion of both advantages and disadvantages and this would go from, in terms of advantages, it would be related to the reversibility and adjustability of the device of deep brain stimulation. And in terms of the disadvantages it would be related to the invasiveness of the procedures – you know it requires brain surgery. And then also connected to the issues of direct modification of the brain. Now there were two issues there were widely discussed in articles on the pharmaceutical interventions but that there were somehow neglected in the neurosurgical articles and that had to do with issues of medical professionalism and industry involvement. So in a way, what we thought and what we discussed mostly in the paper is: are there things that we can learn from the big and rich literature on conflicts of interest within the pharmaceutical industry that can be adapted to medical devices conflicts of interest, and where are new areas that need to be addressed differently that are in a sense unique to the medical device industry.

RM: So another paper of ours that's currently a work in progress will be focusing specifically on public comments. After identifying the ethical issues present in these comments our further analysis showed that there were a few concerns that were interrelated or often discuss together. The most prominent concerns had to do with aspects of medicalization, and the use of alternative treatments to the drugs and surgeries that we were focusing on in our analysis. Of particular interest were the issues of overprescribing and what actually counts as a mental health disorder. The issues with over-medicalization were understandably coupled with suggestions for treatments that didn't involve substantial risk. Sometimes different pharmaceuticals, but primarily therapy. Over-medicalization and desires for alternative treatments were often discussed alongside medical profession issues. Primarily mistrust of doctors and scientists and questioning whether the doctors really knew enough about the treatments and procedures they were prescribing. So far these [comments] have shown an interesting perspective on these questions. They have the potential to tell us more about how the understanding and opinions on longstanding research methods and prescribing practices are impacting how the public feels about new treatment options, as well as how they're talking with their doctors.

RB: Rachel you're the one who’s been doing the most work on that part of our project for so far, so I'm really looking forward to seeing what comes up. I remember when we were coding seeing a lot of these issues, but kind of getting a sense of what the big picture is is going to be a lot of fun. I actually asked Rachel and Laura whether I could talk about this third paper because as a philosopher it's a topic that's nearest and dearest to my heart. There's a lot of discussion in the philosophical and bioethics literature about whether deep brain stimulation actually threatens people's personal identity. So as Laura described deep brain stimulation involves implanting an electrode in somebody’s brain that then essentially governs their brain activity. And there are some cases that have been reported where individuals who've undergone deep brain stimulation have started to act in ways that are not, that are new, that didn't occur before the surgery so there's been a couple of case reports of people who have done things like develop a gambling habit, or experienced bouts of mania when they had never had that issue before. So from a philosophical perspective the question is: is the electrode actually making them a completely different person. And one of the things that I think is really interesting about this is, in our data set in the academic literature, we saw all kinds of discussion about this in the neurosurgical literature especially focusing on D.B.S., but almost nothing in the pharmacological literature even though obviously drugs also influence the brain. And I'm wondering whether this is in part because the electrode is perceived as being more permanent than the drugs, even though it is not necessarily always switched on. Or whether because patients have to keep taking medications, whereas once the implant is in there it's sort of perceived as being outside of the patient's control. Whether these are some of the reasons this seems like so much more of an issue in the case of D.B.S. than it does in the case of pharmacological therapy.

LC: Although, I mean it’s interesting now that you mention it that in the pharma literature there's a lot of discussion especially with Prozac about changes to self.

RB: Right.

LC: Whereas in the neurosurgery it's more about identity and personality.

RB: Yeah, and in the pharma literature as well a lot of it is in the discussion of enhancement, so people deliberately trying to change themselves. Whereas with deep brain stimulation it's viewed as being sort of a side effect of the procedure and therefore not something that's welcome or wanted.
Another interesting thing about this is that we didn't see any discussion of these philosophical issues, like personal identity or agency, in the public discussion. Instead what we saw was a lot of discussions about personal responsibility, which we saw especially in the pharmaceutical literature and which we saw in the pharmaceutical literature written by academics as well, and I’ll talk a bit more about that in a second. The public did actually, in the context of talking about neural implants, people talked about mind control, but it seemed to be more of a political concern. So people would say things like, I wouldn't want an electrode in my brain because then Big Brother will know what I'm thinking, or Big Brother can make me do what the government wants. So it wasn't really seen as a medical function. And I think a lot of those comments were actually sort of at least partly joking, but I also think that they reflect sort of a deeper underlying concern about loss of control. So I think it'll be interesting to get into that.
And then also with that paper I had mentioned that personal responsibility comes up a lot in both the academic literature and the public comments. But almost entirely in the discussion of pharmaceutical interventions so people are very concerned that instead of taking medications people should be taking responsibility for their condition, by doing things like changing their diet, or exercising, or going to some form of talk therapy. Or at the very least even if they're going to take medication that they should be doing these other things as well. So we're still sort of wading our way through that part of the data but there are some really interesting issues that are coming up.

LC: Well now, we've been collaborating for almost two years and so now I would like to ask Rachel what has been her experience and if you have liked it so far?

RM: Yeah. So when I, before I applied to be a research assistant, I assumed that neuroscience research was just sitting in a lab and looking through a microscope. I wasn't expecting to be a part of a project that focused on the implications of research in new treatments. And the ethical perspectives and the focus on public opinion that I’ve learned from being a part of this project helped me see new dimensions in my neuroscience courses, and it also helped me a refine my research interests, my goals for after my undergraduate education. So I could focus on science communication and science in society.

RB: And actually I just feel like I need to interject here that you know as a Briggs student you are seeing this in some of your classes but it's really awesome that you're getting a chance to really engage in the hands-on not lab related no microscope research. And just also to say again how wonderful it's been to work with you.

LC: Yeah Rachel has been a really bright student collaborator so. And so the other thing that we want to share with you is that our collaboration has not only yield you know papers and posters and presentations. But it has also allows us to have the pilot data to submit our first NIH, National Institute of Health grant. This was, we were lucky in a way, because last year they released the first call for grants specifically looking at neuroethics. So once that was released I said to Robyn, we have to give it a shot. We cannot lose this opportunity and fortunately she agreed that yes we should do this. And so now we submitted our grant last week and as we continue finalizing the publication of the papers that are still a work in progress we will be doing that with the hope that we'll have good news in a couple more months.

RB: Right and that in a couple more years we'll be doing another podcast on that research.

LC: Exactly. Well thank you for listening.

LM: Thank you for joining us today. Please visit us online at bioethics.msu.edu, and follow us on Twitter @MSUbioethics. This episode of No Easy Answers in Bioethics was produced and edited by Liz McDaniel.

No Easy Answers in Bioethics Podcast

Medical Workforce Diversity and the Professional Entry Tax: Bogdan-Lovis and Kelly-Blake - Episode 6

February 8, 2018 Libby Bogdan-Lovis photoKaren Kelly-Blake photo

This episode features Libby Bogdan-Lovis, Assistant Director of the Center for Ethics and Humanities in the Life Sciences, and Dr. Karen Kelly-Blake, Assistant Professor in the Center for Ethics and the Department of Medicine at the Michigan State University College of Human Medicine. As leaders of a multi-institutional research team, they were interested in examining strategies and associated rationales for expanding underrepresented minority presence in U.S. undergraduate medical education. In this episode, they provide insight on what their scoping review has revealed, focusing on the notion that underrepresented minorities in medicine are often expected to pursue a service track—an expectation not placed on their white majority peers.

Listen now on H-Net

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.

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Episode Transcript

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. Today’s guests are Center Assistant Director Libby Bogdan-Lovis and Center Assistant Professor Dr. Karen Kelly-Blake. A multi-institutional research team led by Dr. Kelly-Blake and Libby Bogdan-Lovis was interested in examining strategies and associated rationales for expanding underrepresented minority presence in U.S. undergraduate medical education. To look at trends over time, their research team undertook a scoping review of the 2000-2015 literature to see what the literature might reveal about those efforts. In this episode, Karen and Libby discuss concerns that emerged from the review regarding covert expectations that underrepresented minority physicians are being trained to meet the medical needs of vulnerable populations.

Libby Bogdan-Lovis: Okay, I'm Libby Bogdan-Lovis, I'm the Assistant Director at the Center for Ethics and Humanities in the Life Sciences in the College of Human Medicine at Michigan State University.

Karen Kelly-Blake: I am Karen Kelly-Blake, I'm an Assistant Professor at the Center for Ethics and Department of Medicine, here at Michigan State University.

LBL: And Karen and I have been working on this project for a number of years now, and we have colleagues in other places. Nanibaa’ Garrison and Faith Fletcher, Nicole Smith and Morgann Brafford and Brittany Ajegba all helped us with this project. We are calling it “A Professional Entry Tax: The Covert Costs of Racial and Ethnic Concordance in the Medical Workforce.” And we should probably start out by explaining our observations regarding the notions of identity matching between physicians and patients. There seems to be some general agreement that it's desirable to have a physician workforce that reflects the race/ethnic composition of the patient population, and in fact we agree that that's the right thing to do. Borrowing from the title of a 2001 I.O.M. report—Institute of Medicine report—on diversity in the health professions. But we also wondered what future costs there might be for underrepresented minority [URM] physicians, who are associated with programs and policies that attempt to expand the numbers of underrepresented minorities in medicine. And most especially when the rationale most commonly mentioned in the literature is that the justification is societal benefits, and by that we mean those benefits that might accrue from the extent to which underrepresented minorities in medicine provide care for vulnerable and historically underserved populations.

KKB: So, having that background, we set out to examine the content of literature over a fifteen year period, 2000 to 2015, to see what it might reveal about trends and programmatic strategies used and the associated policy rationales mentioned for increasing underrepresented minorities in medicine. We wanted to focus on that refrain commonly attached to discussions about increasing URMs in medicine that is, that it enhances access for underserved vulnerable populations. There were around ten major reports issued on increasing health care workforce diversity and all mention the societal benefit of service to the underserved. Many pointed to the notion of benefit derived from doctor patient race/ethnic and concordance. In other words when physicians and the patients they care for share some aspects of that identity, visually through appearance or through language or some measure of culture.

LBL: Yeah, and in fact, for benefits it's true. It's been demonstrated repeatedly that underrepresented minorities in medicine do indeed provide medical care for vulnerable populations, to an extent far greater than their well represented peers. But what got our attention is that there's a paradox here. The same 2001 Institute of Medicine report mentioned earlier had a caution that got our attention, and I'm going to quote here. They said, “We must be vigilant against the potentially pernicious effects of creating the expectation that minority physicians are being trained solely to provide health care services to minority patients.”

KKB: So, I'm going to push back a little bit with Libby, because Libby and I have had this conversation before. She likes to use language “well represented peers” which means absolutely nothing to me.
[Laughter]
So what we're talking about are underrepresented minorities, how we're defining that, and we're talking about their white medical student counterparts. That's who we're talking about. The challenge is that underrepresented minorities in medicines are being targeted to serve underserved populations in a way their white peers are not being targeted.

LBL: And in fact, that's one of the reasons we chose to look at African-American and Latino and Native American—American Indian—populations, including Alaskan Natives.

KKB: Correct. So, the concern that we have is that underrepresented minorities in medicine might be viewed as instruments to address failings in our health care system. In such a circumscribed rescue role for the U.S. health care system, URMs then would have delimited professional futures through policies, loan payback programs, and the subtle incentives of positive feedback rewards. URMs essentially would be guided into what in our research we call quote unquote “service” tracks to address the broader societal need to expand care and access for vulnerable populations. What got our attention is that this expectation is in fact quite common, and we found an increase in mention of that particular rationale over a fifteen-year period. The repetition in the discourse in itself might independently amplify the expectation and reinforce strategies. And if I might add before Libby joins further is that we also see the same sort of service track cropping up in admissions decisions, that depending on what university you're applying to, whatever they decide is their mission. If their mission is to provide care to the underserved, which is a very noble laudable mission. If part of that admissions process is to then sort of mainstream pipeline students into those particular tracks as a way for them to achieve admission I think that also is an issue.

LBL: So is it common that admissions look for that commitment?

KKB: I think right now with admissions the idea is to use a holistic approach and part of that holistic approach is to consider people who are coming in from disadvantaged backgrounds, however you want to define that. Socioeconomic, sexual orientation, race, ethnic, rural-urban designation. All those things come into play through a holistic process. I think one of my concerns is whether or not that holistic process amplifies the notion that those people who come from the disadvantaged background are then targeted to physicians’ specialties to focus on serving underserved. It goes to primary care, internal medicine. And those are great specialties, but it should be the choice of the individual, and their future careers should not be delimited in any way by making that choice.

LBL: And tracking them into those specialties means not opening up their future possibilities to others. I guess to illustrate, it seemed to us that well-intended policies and programs might paradoxically be placing sort of an entry tax on underrepresented minorities into the medical profession. And in the long run unfairly curtailing their medical professional possible futures, that those individuals have more restricted options.

KKB: And I was thinking about this earlier, and I should say for the record that Libby really has been the driving force behind this research and she's been doing a fabulous job.

LBL: Thank you.

KKB: This idea of an entry tax, and I was thinking is the tax just, this idea that it's by chance because of the chance of your birth. That just by the chance of your birth you're born with a particular disadvantage. So, you decide that as you’re growing up you want to become a physician, and because of that disadvantage it's seen that if you want to be a physician then maybe you also want to serve the people in your own community. And for many people that is true, they do want to give back. They have this very noble, very deeply held idea that they should give back. But what about those people who don't hold those same sorts of plans and ideas and notions, but maybe feel constrained that they have to present themselves in certain ways in order to get that prize which is entrance into medical school.

LBL: Yeah absolutely.

KKB: So, one might argue that this sort of tracking simply provides another avenue to enhance medical workforce diversity, and that in and of itself another avenue is fair and just to those individuals taking advantage of such a pathway. But that argument would be ignoring the downstream impact on those individuals’ professional future. Devoting their career to service has relatively less remuneration than pursuing high status well-paying residencies and subspecialties. Equally it also requires that they turn away from careers in medical research and medical education.

LBL: Yeah, I agree. And medical education… I remember seeing an article that suggest that medical education, really there's a tension between viewing it as a social good and viewing the education piece as an avenue for people to advance themselves in a particular career. So, it's a social good I guess in educating and training physicians to meet society's healthcare needs, but it's also that recognized professional avenue to advance your own lot in life. To pursue a relatively satisfying career because it's well paying, it includes opportunities for advancement, and through our research we feel that URMs should be afforded those professional perks just the same as their well represented peers, of majority white peers.

KKB: So, I think one of the questions we can answer for our audience is why do we feel that this research is valuable in today's world. So, we hope it will heighten awareness and open up discussion about the hidden expectations placed on underrepresented minorities in medical education. Expectations that are not placed on their white majority peers.

LBL: Yeah. And there's another, I mean, there are lot of concerns related to our research. A related concern is that other factors might explain the high level of service to vulnerable populations. There is certainly a possibility of institutional racism that might restrict underrepresented minorities’ practice locale. Where can they hang a shingle and have a practice. And it might not be economically or socially tenable for an underrepresented minority physician to set up practice in a white populated community. Another concern is that the notion of concordance could perversely be turned around I guess, to suggest that white patients should be able to see a white doctor and work against underrepresented minority diversity expansion in the workforce.

KKB: And finally there is an admitted risk to drawing attention to the issue. There are those who might say, “Hey, first let us in the door before you go mucking around with these fairness concerns.” But we argue that the societal need to provide care for underserved vulnerable populations is a responsibility, perhaps a burden, that should be equally shared by all in the medical profession. And not have that responsibility shifted to underrepresented minorities in medicine.

LBL: I guess our listening audience might wonder what got us interested in this, and I would credit one particular student who said to his peers, “You know I know when I get selected to show up for some kind of big event where I'm standing in front of the audience. I know what they want me to say, what they want me to say-” and I guess Karen you alluded to this earlier, like with admissions students knowing what's expected of them, “They want me to say that I want to become a physician so that I can go back and take care of my own.” He said that, “In fact I come from a really, really difficult background. I sometimes call it the hood in South Florida.” And he said, “I don't want to go back and have a profession, and have my profession there, and to practice my profession there. I want to go to a city, I want to raise a family in comfortable circumstances, and that wouldn't be back where I was raised, and yet I know that's really not what they want to hear from me.”

KKB: So that sounds like a very enlightened, self-aware student-

LBL: He was, and brave.

KKB: Yes, and brave. To understand what the expectations are, but to say that's not what I want for my own professional life. So, what are our goals for this research? We have embarked really on a preliminary analysis really of what's happening in the literature. I think we've talked about this that maybe some of our future goals is to try to see what current data is available at our own institution here at Michigan State University, College of Human Medicine. I think ideally the idea is to seek and hopefully gain funding to perhaps expand for a statewide assessment. And probably the long-term goal and vision is to really be able to do some sort of nationwide survey, to see what really is happening across the United States. And I think what you've mentioned before is really to maybe try to be able to do a comparison between what's happening internationally and in the U.S., you may want to expand on that Libby.

LBL: Yeah, I think it would be very interesting to open up the conversation to see what other countries are doing to address these issues. As I mentioned to you Karen, when I was in London I was struck by the amazing diversity of their medical workforce, it's phenomenal. I'd like to know if they pay attention to these issues and where they come into play, and if so, how.

KKB: And it might be interesting too, and I don't know if I'm digressing here. But considering your past experience in the UK and this idea that they actually start their students early on within this whole sort of medical school adventure. Can you speak to that at all?

LBL: Yeah so, the students go through a very intensive high school equivalent, high school education, and then take their exams and apply for medical school at that point. So, they come out much younger. They’re done when they're about twenty-six or twenty-seven and entering into the medical workforce at that point.

KKB: So that might be something interesting for us to think about as we're continuing our work. How those sorts of models compare to the model of medical education here in the U.S. What, how do those models impact these sorts of discussions about increasing diversity in the medical workforce?

LBL: The other thing I would like to look at if there were some way to incorporate this is the aspect of intersectional identity. That the professional identity is one of many identities. And there might be sexual orientation, gender issues, locale, whether or not there's a whole issue of foreign born medical practitioners. Who, you know, might by the status accrued with being a physician and perhaps the status they had in the country they were born in, be a higher level than the way they are treated once they get into the United States. So that's another complexity of intersectionality that I think would be really interesting to explore.

KKB: So, it sounds like there are a lot of areas that we can research and really add to this particular research. A lot of ways we can, not necessarily diverge, but how we can really complement what we've already been doing.

LBL: I think so. Yeah, it's opened up a lot of doors, which is what we had hoped to get accomplished with the scoping review.

KKB: So, do we have any final words for the audience?

LBL: I think that’s it.

KKB: Alright, well thank you all very much.

LM: Thank you for joining us today on No Easy Answers in Bioethics. Please visit us online at bioethics.msu.edu, and follow us on Twitter @MSUbioethics. This episode of No Easy Answers in Bioethics was produced and edited by Liz McDaniel.

No Easy Answers in Bioethics Podcast

Comparing Chinese and American Bioethics: Cheng and Tomlinson - Episode 4

December 14, 2017 Guobin Cheng photoTom Tomlinson photo

This episode features Dr. Guobin Cheng, Adjunct Associate Professor with the Center for Ethics and Associate Professor at Southeast University in China, and Center Director and Professor Dr. Tom Tomlinson. Freshly back in East Lansing from the annual meeting of the American Society for Bioethics and Humanities (ASBH) held in Kansas City, Missouri, they sat down together to discuss differences and similarities observed in American and Chinese bioethics. Based in part on work they presented at the ASBH meeting, they discuss specific case examples as they relate to patient autonomy, family and individual identity, and the patient’s right to know or right not to know diagnosis and prognosis.

Listen now on H-Net

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.

Episode Transcript

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. Today’s guests are Dr. Guobin Cheng, Adjunct Associate Professor with the Center for Ethics and Associate Professor at Southeast University in China, and Center Director and Professor Dr. Tom Tomlinson. Freshly back in East Lansing from the annual meeting of the American Society for Bioethics and Humanities held in Kansas City, Missouri, they sat down together to discuss differences and similarities observed in American and Chinese bioethics. Based in part on work they presented at the ASBH meeting, they discuss specific case examples as they relate to patient autonomy, family and individual identity, and the patient’s right to know or right not to know diagnosis and prognosis.

Tom Tomlinson: Hello everybody my name's Tom Tomlinson. I’m the Director of the Center for Ethics and Humanities in the Life Sciences at Michigan State University. And today we're joined by Dr. Guobin Cheng from Southeast University. Guobin say a few things about yourself.

Guobin Cheng: Hello everyone I’m Guobin Cheng and I’m the Director of the Department of Medical Humanities, Southeast University, Nanjing, China. It's my pleasure to join you and we can discuss something about medical ethics.

TT: Yes. So, Guobin was a visiting professor with us for a year from March 2015 to March 2016. And on frequent occasions during that year, he and I would sit down and just talk. And talk about our clinical experiences, because of course he is trained as a physician and has a number of clinical experiences himself in that role. And I have been involved in clinical ethics consultation with some of the hospitals near Michigan State University. So we both had experiences of various kinds and we would then compare notes with one another. And that's kind of what we're going to do today. This is based in part on the panel that he and I did at the recent meetings of the American Society for Bioethics and Humanities in Kansas City. So Guobin why don’t you start with, say something about that case of Mrs. Yuan.

GC: Okay. Let’s begin with this case. This is the real case where I was a surgical resident. So Mrs. Yuan is my patient. She is a 70-year-old woman. With an advanced colon cancer. So the case will start with an interview between us, and one year before the interview she got operation to remove the tumor. But as you know, the doctor on the case and the family member didn’t tell her the truth about her diagnosis and prognosis. So usually in China when a patient got diagnosis of cancer, the doctor will tell to the family member and will not tell anything about that to the patient themselves. But this is the problem. So in this case before Mr. Yuan came to my office is to get some recommendation about a new surgery. Because she got some other disease, but because she don’t know that she already has advanced cancer. And the doctor and her family members thought okay you have advanced cancer, so maybe you cannot live very long and the new surgery maybe do not give her much more benefit.

TT: But they didn't say that to her.

GC: Yeah because he didn't tell her the truth at the beginning, so I think this is the common problem the Chinese doctor and especially Chinese doctors have to face, because if you don’t tell a patient the truth, so when the patient about to make a new decision, they cannot make the right one. But the dilemma is why should the doctor tell them all the things.

TT: So why didn't, so why didn't the family want to tell her?

GC: Yeah. Actually the family members think the bad news will be, do some damage to the patient’s metal health or other things.

TT: Mhm.

GC: The most common reason is they believe the very bad news will destroy the people, the patient’s hope to fighting the disease.

TT: Yeah, right. So, you know I think that there are similar kind of thinking in the U.S. often. There is a lot of concern about whether or not patients will lose hope especially patients—with some advanced metastatic cancer for example—will lose hope if they're told, they may be told their diagnosis but there is often some reluctance to tell them what their prognosis is, about how much longer they have to live. Because of a concern that if you do that they will lose hope and their last months will then be much more distressing than they could have been, if you had kept that from them. So you know remember we talked a lot about the situation I described of a lady who had metastatic ovarian cancer, had gone through numerous treatments that produced only very temporary remission and was in a phase three clinical trial. She remained optimistic. Thinking that so long she was a fighter she was going to beat the disease and her oncologist had not spoken directly to her about her prognosis. And she showed little interest actually and never asked him about it. But her husband and children approached him asking that he not tell her because they are worried that she would in fact just be decimated, if she were to find out. And he agreed so long as they understood that if she asked him directly he would have to tell her the truth. But if she didn't ask he wasn't going to tell. So that sounded, seemed to me like a situation that's not uncommon in the U.S. but kind of like the case that you just described.

GC: So I think we could find that the reason, actually it looks very similar between the U.S. and China. So I think we can find some questions in this situation. The first one is: Does the patient themselves want to know everything, even the very very bad prognosis. I have little worry about that. So for my experience, I find some patients actually they did not want to know everything. Maybe they want to know the diagnosis but I think it’s a little hard for the doctor and the families to tell them you only have one month to live. So I don’t know they are any surveys about how the patient’s wishes about that.

TT: So in the U.S. there are if you when you survey patients or the general public about whether they want to know these things the great majority say yes. That they want to know everything. About their illness including the prognosis, including bad news. On the other hand, one of the other things that they tend to say is that they want to be asked first. So there is a bit of a tension there, which because it, what that suggests is that they might want to be able to say no. They might want to be able to shield themselves from the news. But what's significant about it is they want to have control, of whether or not they're going to get that that news or not. And that's then produced as practice that I think was reflected in the case that I described, where the recommendation is before you share bad news you have to basically get permission from the patient. So there's this idea that patients have a right not to know in the U.S. And so that ends up then producing a situation where patients aren’t told, that is similar to the situation in China although maybe the origins of it or the reasons for it are different.

GC: So I will focus on a point that in the U.S. the patient have the right to know or not know. Okay?

TT: Mhm.

GC: So but in China the situation is a little different. Because most of the family members and the doctor, I have to say they did not very concerned about the patient’s individual rights. They pay more attention on the some cancer patient’s best interest. So the logic is they believe that bad news will damage to the patients and so to keep the patients’ best interest we will keep secret from them and it’s right. The patient’s right, individual right to be informed is out of the picture. Okay. Another thing is… Please let me go back to a little. What is the meaning of “everything?”

TT: Well what is the meaning of everything?

GC: Should it be include diagnosis, of course. But will we talk about prognosis, I think does “everything” mean you have to tell them you will be dying one month later or just to give them some different options at the end. You maybe have a chance to die one month later and you maybe have chance to live a little more longer. So what’s the meaning of everything?

TT: Well I think so this, so one way to put the question is, what kind of information do I have an obligation to the patient. I have an obligation to provide the diagnosis but how much of an obligation or what kind of obligation do I have to give the prognosis. And I think the answer to that question may connect up with another difference. I think in the U.S. it's going to be the patient so long as there are competent, it's going to be the patient who's going to be making decisions about what treatments they get. They'll have to give their permission for a surgery for example or their permission to enter another research trial, you know to see whether this new treatment might help them or not. It won't be the family that’s asked and so if it's the patient who's going to be making decisions about their treatment. Then the information that's even more important than a diagnosis is the prognosis. Because if the patient, for example, if the patient really understands that even with treatment they may not live very long, they will have a, they may have a very different attitude toward getting further treatment. They may decide you know what I'd rather feel better and not suffer the effects of my chemotherapy and have my last months more comfortable, that's what I prefer. So if it's the patient, so that's what the concern is about the patients not knowing in the U.S. not knowing that they have terminal limited prognosis, is that they can't really exercise their individual autonomy about whether to be treated or not. But is it different in China?

GC: Yeah, I think the Chinese doctor and family members maybe pay not attention on the patient’s best interest, okay let me use this word, and so they really not very care about individual autonomy. Usually people used to negatively asses the patient’s reaction of the bad news. And also negatively asses the patient’s capability to make decision when they are old and very sick.

TT: So they didn’t think the patient would be able to take the news? Or make good decisions?

GC: Yeah. So the second reason is about the capability. So that give the doctor and the family members excuse to make me think okay I can keep this secret because the patient seems to don’t have the capability to do that decision making.

TT: Hm, okay.

GC: So I’m not just ignore the autonomy. I didn’t give him the information because he can’t use the information to make decision.

TT: Because I have an excuse, I have an excuse now for not asking the patient because I assume that the patient is not able to make the decisions. If I didn’t assume that, if I assumed that the patient was able to make decisions, then it would be a much more difficult decision to take that power away from the patient, than it is if I assume the patient can't decide. Well then someone else has to decide and that someone else should be the patient, I mean should be the family and the doctor.

GC: Yeah, yeah. Usually the Chinese doctor and the family assume that he patient didn’t have the capability. And so if we go to the hospital in the real clinical context we will find if the patient is really strong willing and they always be in charge of the family before they go to the hospital, he can express their own idea very clearly and strongly and ask strong the doctor and patients to do something to inform themselves the diagnosis, they will get the news. So it depends on the patients. Okay, sorry. But we will not put the autonomy on the first level. We have to make an assessment of the patient’s situation and to find out why they could got that capability.

TT: Mhm, right. So, so in China the very assertive patient, the patient who demands to be told, is probably going to be accommodated. You know the people will then-- okay so the patient will make the decisions. But I want to go back to this, this idea that the assumption that supports the family taking on this role, is the assumption that the elderly patient or the patient who is, who is very sick with that with a bad prognosis isn’t able to exercise their right of autonomy. Suggests that the difference may be the difference between the U.S. and China is not so much whether the individual person has a right of autonomy. It’s a, the difference is the assumption about the fact. So the assumption in China is that patients who are in certain situations don't have the capacity to make the decision. Not that they don't have a right of autonomy, but they don't have a capacity. Where in the U.S. it tends to be the reverse. And if that's true then we should remember in the in the U.S. side that it wasn't all that long ago, not until into the 1970s, where it was a very common practice in the U.S. not to tell the patient with cancer even their diagnosis for fear that they would not be able to take it and to turn to the family instead to give them decision making authority. And the reasons that supported that historically in the west are very similar I think to the reasons in China.

GC: Okay I think the situation in China is also changed in last decade years. And more and more patients the doctors and family members accept the concepts of the individual’s right to be informed and the patient’s rights such kind of the concepts. And there are some survey to show more than 60% the patients want to know everything, even the bad news. But actually in the clinical practice I think the patients is only no more than 40%.

TT: Okay, okay.

GC: The patient could get the news. So I think I should give some tips to the autonomy. Actually I don’t think Chinese did not accept the idea of autonomy, as you said. They just focus on the fact, why the patient can’t use their autonomy to make a good decision. So they actually put more attention on the outcome of the decision. So I don’t know why that. My understand is right, so I think in U.S. if the patient have the competent to make decision, we have -- make sure the patient have the capability to do that. So why the, any kind of the decision they made will we accept that.

TT: Yes.

GC: But in China little different. We have to make assessment of the decision itself. If it the decision is a good one, depends on some shared value we will say okay.

TT: If it's a decision, if it's a decision that we agree with.

GC: Yeah. Yes that’s okay. But if the decision is a bad one we will consider, does the patient have the capability, so yeah.

TT: Yeah, yeah. Well okay. So you know in the U.S. the legal some legal presumption is that every adult has the ability to make decisions for themselves. So if we have concerns about a particular patient in the hospital, say, and we're thinking well maybe we should or should we be looking to this person to the patient to make decisions or should we ask the family or someone else to make decisions for them. The very first thing we have to do is to evaluate their capacity. So there's an assumption that the patient has the capacity and now it's our responsibility to show that they don't. And it's only after we've shown that they don't, that from a legal point of view it's okay for us not to ask them any longer, but to ask family or ask somebody that they may have appointed to represent them or whatever it might happen to be. So there is much stronger protection legally I think for the patient’s autonomy perhaps in the U.S. On the other hand we are most concerned about whether the patient has capacity, if they are making decisions we think are wrong. So if the patient's making a decision that everybody around them thinks is a bad decision to make, we will be looking much more carefully at their capacity than we would otherwise. If they're agreeing with us, well they're fine. We're not going to dig any deeper. It’s when they're disagreeing with us that we get alarmed and we begin to look more closely because we want to make sure that if they're going to make a bad decision, it's their bad decision. And will be their responsibility and they'll have to bear the consequences. Because one of the ideas about autonomy is that I have the freedom to make bad choices and then it's my responsibility if that's what happens.

GC: So I think actually the situation in both side is much more similar than I think, than I thought okay. Okay on one hand is a patient’s individual autonomy to make any decisions they want to make. On the other hand there are always some others will be assessed the decision is good or bad. So I think the difference is, how can I say, when the patient make a bad decision, the family is right to join decision-making. The family members’ role that played in the decision making is a little different. I think the Chinese family member played much more stronger role in the process but in U.S. sometimes they may be out of the pictures.

TT: Right.

GC: Okay. But the whole logic is much more similar. And if we have to find some difference I think actually I think the Chinese people more and more accept the idea of the individual, individual’s rights and the individual’s freedom. And we also affect by the very traditional idea about the person live first as part of the family. The first level identity of a patient is he or she was member of a whole family.

TT: Mhm. Was shaped by family that they were, that they grew up within a family. They were shaped by their family.

GC: Yeah.

TT: They for those reasons have obligations to their family.

GC: Yeah.

TT: And not just to themselves.

GC: Yeah so she should, in my case, she should not to do something absolutely different from her family members’ wishes. They even thought the patients have the duty to not against the family’s wishes. But if the conflict is very strict, for such a, in my case, Mr. Yuan wanted to extra operation to remove a new small tumor to release her some suffering and the family members think that is a bad decision. But after a home meeting when the family members understand why she want to do that operation is because she believe the suffering is much bad than prolonging her life. Because, the word is a little difficult, it’s frequent urination.

TT: She had urinary incontinence. She couldn’t control her urination because of this other tumor, and as I remember the case, the situation from the family's point of view was that, no is there's not really any point in doing this because they knew that she had this terminal illness. But the patient, they didn't really appreciate how much distress this caused the patient. If she, this urinary incontinence, and that's why she wanted the surgery.

GC: Yeah, she think the situation destroy her identity as a person.

TT: As a person. Right. And dignity.

GC: Yeah, but usually the family members did not consider it about that. They focus on physical benefit. They focus on how long they will live and they focus on the, some other things, we call subjective.

TT: Yeah the subjective or psychological, rather than the physical.

GC: Yeah, but at the meeting when the family members know Mr. Yuan is hard to understand his situation. How to, how much she want to protect her own identity. She understand, they understand her decision. And they receive the operation at last.

TT: Yeah, they agreed.

GC: They agreed.

TT: Well, so actually Goubin and I have another case that we discussed at ASBH that, it was a comparison between China and the U.S. with respect to the patient's desire to make decisions not just for themselves but also for their families. I don't know if we, we don’t have time to talk about all the cases. But I'll just maybe conclude by saying and I’ll ask you to make comments too. That you know I think, Goubin, that in this conversation we just had about this case, things came out that hadn't come out before. [Both laugh] And that's been my experience in talking with you. Is that we've talked about these cases many times or different or related cases many times, and every time we talk something new surfaces. It may be a new difference that we hadn't recognized before. It may be a new similarity that we that we didn't recognize before. And this is just evidence of how interesting and complicated these kinds of comparisons are going to be.

GC: Yeah actually I made some notes about these discussions but when we began I almost struck all of those and we always can find something new we discuss. And I think people from different culture want to understand each other. They have some different approach, we can just from the theoretical ones, we can find some terms that can describe how diverse we are, very simple.

TT: At a very abstract level.

GC: Yes. For example, Americans is individualism, and Chinese is familyism or collectivism. Such as like that. Another approach is we can go into the real world to find the facts, how to affect the clinical decision-making or clinical behaviors.

TT: Yeah if we get down to the closer to the ground and not so high up, if we get down closer to the ground, then I think we can have much more informative conversations that help us get beyond stereotypes. Cultural stereotypes.

GC: Yeah.

TT: Well so this is been, you know this is why it was such a pleasure to have you with us for that year and I know I look forward to our continuing conversations and collaboration.

GC: Of course, it's my hope, it’s also my pleasure to do that. And I also hope I can, we can find more opportunity to involve, to more and more people joining us, to make this discussion more how can I say…

TT: Richer.

GC: Yeah richer.

TT: Yeah I hope so too. I’m sure we will. So thanks a lot Guobin.

GC: Thank you Tom.

LM: Thank you for joining us today. Please visit us online at bioethics.msu.edu, and follow us on Twitter @MSUbioethics. This episode of No Easy Answers in Bioethics was produced and edited by Liz McDaniel.