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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

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.

No Easy Answers in Bioethics Podcast

Shared decision-making in medicine: Barry and Holmes-Rovner - Episode 2

October 12, 2017 Henry Barry photoMargaret Holmes-Rovner photo

Dr. Henry Barry, Professor in the Department of Family Medicine and Senior Associate Dean for Faculty Affairs and Development in the College of Human Medicine, and Dr. Margaret Holmes-Rovner, Professor Emerita in the Center for Ethics and Humanities in the Life Sciences and the Department of Medicine, discuss their often-overlapping and collaborative work in the areas of shared decision-making and evidence-based medicine. They reflect back on how they got started working in these areas at Michigan State University in the 1980s, and provide insight on where things currently stand.

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.

Related Publications

Holmes-Rovner M, Srikanth A, Henry SG, Langford A, Rovner DR, Fagerlin A. Decision aid use during post-biopsy consultations for localized prostate cancer. Health Expectations. Epub 7 Sept 2017. DOI: 10.1111/hex.12613.

Stacey D, Légaré F, Lewis K, Barry MJ, Bennett CL, Eden KB, Holmes-Rovner M, Llewellyn-Thomas H, Lyddiatt A, Thomson R, Trevena L. Decision aids for people facing health treatment or screening decisions. Cochrane Database of Systematic Reviews 2017, Issue 4. Art. No.: CD001431. DOI: 10.1002/14651858.CD001431.pub5.

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 we are joined by Dr. Henry Barry, Professor in the Department of Family Medicine and Senior Associate Dean for Faculty Affairs and Development, and Dr. Margaret Holmes-Rovner, Professor Emerita in the Center for Ethics and Humanities in the Life Sciences and the Department of Medicine. Dr. Barry and Dr. Holmes-Rovner discuss their often overlapping and collaborative work on both shared decision-making and evidence-based medicine, and they provide insight into where we've been, what we've learned, and where we're headed in the future.

Margaret Holmes-Rovner: I’m Margaret Holmes-Rovner. I'm Professor Emerita of health services research and ethics in the Center for Ethics. I've been at MSU since 1980 and I'm still research active here.

Henry Barry: Hi Margaret, I'm Henry Barry. I am a professor in the Department of Family Medicine here in the College of Human Medicine and I've been here since 1989. In the last couple of years I have served as the Senior Associate Dean for Faculty Affairs and Career Development.

MH-R: Okay and I think we're… we're here to, um, talk about our career long activity. Me in shared decision-making and you in evidence-based medicine.

HB: Yeah, it's good for us to get back together again. We've worked off and on over the years and I… I miss having you around in my life on a regular basis.

MH-R: That's true we've collaborated on some articles and certainly on some projects of… of mutual interest. So, I was reflecting on, um, kind of where… how I got to be relatively prominent nationally and internationally in shared decision-making and I've come… and I want to tell you a couple stories that go back to the 80s, I mean one thing obviously is to do good research and get funded and write, but that's not really the whole reason at all that, um, some of my activities came together in there. They had to do with building teams and with collaboration. Um, and you know, I was lucky enough to be hired into Arthur Elstein’s research group in medical decision making which may have still been going when you were here…?

HB: In 1989, he had already retired.

MH-R: Okay.

HB: When I was doing my residency here in town from ’82 to ’85, he was still around.

MH-R: Oh right.

HB: Yeah.

MH-R: Okay. So…

HB: He came to campus a few times in the late 80s and early 90s to do some follow-up consulting.

MH-R: Oh okay. So you remember his interest in clinical decision analysis, as well as descriptive work on how doctors make decisions.

HB: Yes.

MH-R: Yeah, so I was lucky to join that group, um, and was hired into a grant, a program project grant from the National Library of Medicine which had four different cases of to describe how doctors make decisions and to compare them to the rational models that he had come to know through the clinical decision analysis stuff. Um, but so how did … where did you get started with evidence based medicine?

HB: Well, you know I've always been a bit skeptical, I've always been a self-directed learner where I would just try to figure out what are the things that I need to know and then find answers independently. And that level of independence and skepticism was really enhanced by Jack Pascoe, who was a pediatrician here in Lansing back in the 80s, when I did my residency. He would host these journal clubs and the journal clubs I was exposed to as a student was “oh here's what the article says and let's go do that,” well Jack actually challenged that approach which really fed into my skepticism. You know not everything that's published in The New England Journal is true and that was like “oh my gosh!”

MH-R: (laughs)

HB: So … so that was … that was the first time I was exposed to academics really challenging at a foundational level the quality of the underlying research. Not the questions or who they studied but whether or not they actually got it right. So from there I continued my training I practiced for four years in Appalachia got, um, really enmeshed into caring for people and becoming fairly pragmatic. And then when I came to MSU as a faculty member, I had an opportunity to get some additional training and so I got a master's program in clinical research design and statistics, which helped me with asking better questions, thinking about how to design better ways to answer the questions that I had inherently, but it also reinforced some of the skills that Jack Pascoe tried to train which was that you know there is a right way and a wrong way to do research and that in the real world sometimes you have tradeoffs. So that was really to me the night as was … was Jack.

MH-R: Yeah and for me the same kind of skepticism and you know we were- had … I was trained as a qualitative sociologist and then I came into this research group when … when we were really just beginning nationally to think about what do the rational models suggest that people should do, as well as just what, um, what do they do and how … how do they learn it from their peers. So as you know the Society for Medical Decision Making was full of such skeptics and people who were in love with clinical decision analysis and cost effectiveness analysis. So here's the story that there's the networking story that I enjoy telling because it really is the beginning of shared decision-making, having an international presence, and what happened was, um, through, um, the 80s, I had in the Society for Medical Decision Making had got to know Hilary Llewellyn-Thomas, who was a researcher at … um, in Toronto at the University of Toronto and Annette O'Connor who was at Ottawa, among other people. And so in 1999, um, my favorite colleague and husband David Rovner and I met up with Hilary and, um, Annette at the International Society for Technology Assessment in Health Care. And ISTAHC was being held in ‘99 at Edinburgh Castle and the four of us were going to Edinburgh Castle, and I … I went into them and I said, you know we've learned so much in the last fifteen years of doing research, almost twenty, that we've reported at SMDM and other places, why don't we do a sabbatical together? What would you think, we'll write a book, and they said “oooh that sounds like fun.”
So I said okay I'm looking for a sabbatical, I'm going to my … I’ve already been to London and talk to Angela Coulter at The King's Fund. I'll find Angela and see what she thinks of perhaps hosting us in Oxford. And they said “oooh that sounds like fun go for it,” so I was looking for Angela and, um, Edinburgh Castle the organizers of the meeting had spent a whole lot of money on bagpipers and wine but not a whole lot of money on food.

HB and MH-R: (laugh)

MH-R: So we were all very hungry in the place … the little place where the food was getting very crowded but I did find Angela and I said Angela I've talked to Hilary and Annette and we think we'd like to write, um, a book about what we've learned about patient values, patient utilities, physician decision-making, and how these fit together and form the basis for shared decision-making and for evidence that we can give to patients and give to clinicians that will help them make better decisions. Well she got very excited and said, “oh if you're going to do that,” she said “I have a phone call waiting for me in my hotel, with a request to start a branch of the Picker Institute and I'm going to start it in Oxford and if you'll do that, I'm going to say yes, we’ll … I'll do … I'll start Picker and the … you all can come and we'll start … we'll do work together. Which we did. We spent six lovely months, we all shared an apartment in Summertown in-- near Oxford. And we wrote a couple of articles and we thought we'd done great work. But then as we were about to leave, the … the English do a lot of things over dinner, so we were having dinner and Muir Gray, who was the director of the Institute for Healthcare there in Oxford, turned to me and he said, “well that's fine, you've been here for six months and talked to us. But you need to broaden the conversation. How are you going to spread … spread the word about shared decision-making?” So, I thought about it overnight and I thought, oh okay, we'll have an international meeting and we'll have a listserv.
Just having the idea gets it done, right? I was fortunate enough that the first meeting of the European Association for Communication and Health Care, EACH, was going to be held at Oxford and they'd already booked it the next summer. And after many hours of negotiations, um, they gave us a track in the EACH meeting and we kicked off the shared decision-making international meetings which have been held every two years since 2001.

HB: That’s great. (laughs) So I have a comparable story as a master’s assignment. We were supposed to do a decision analysis. We had many things as part of the master's program, but that was just one of our assignments. And I had the chance to work with two family physicians, uh, colleagues who eventually became colleagues. John Hickner and Mark Ebell and we collaborated on this decision analysis. We decided actually we're going to do a cost utility analysis, we're going to do more than what the teacher requested. And as family physicians grounded in some pragmatism, we decided to take a common everyday problem, hopefully… yeah I guess it is every day, that many women are afflicted with that's urinary tract infections. And we went to the literature and we decided to, uh, actually do a cost utility analysis comparing many different strategies. And as a result of that, we ended up with some national presentations, some workshops that we did on cost utility analysis methodology, the manuscript. As a result of the … the presentations we got a chance to understand … hear that the National Institutes of Health were just in the process of developing their, uh, their sentinel work on standardizing methodology around this. So we got a chance to meet Marthe Gold and she was very, um, encouraging of this. So the three of us ended up developing a whole series of things as a result of this. Including, um, a spin-off of … of the project, which was the first randomized trial of telephone management of anything. And we learned that this was actually a common approach we just didn't know whether or not it was worth doing or not. And so … so that just led to a whole series of activities. And then Mark and I met Dave Slawson and Allen Shaughnessy who had developed this conceptual framework around evidence-based medicine, that was really much more practical for the averaging … average practicing physician. They called it information mastery. And at its core was a usefulness equation that the usefulness of any information that somebody might use, is directly proportional to its relevance and its validity and indirectly related to how much work it takes to use. So the more work the less useful. If somebody else does the work for you it's infinitely useful. Part of the relevance piece though deals with patient specific outcomes versus the usual things that we measure more easily which are ion fluxes across membranes, lipid levels, things of that nature as opposed to quality of life and survival and those types of things. So we had a chance to meet them and as a result of a conversation in a bar in Houston, which unfortunately is under water right now, um, we developed this whole system of … of alerting physicians. The … we've created this program that has been going on for over twenty years now where we review papers, we synthesize the information, we do critical summaries and … and it's really served as a neat foundation for what practicing physicians can do and try to identify “well can I trust this information or not,” and it's kind of neat to think back that this all started just through a couple of casual homework assignments and, um, and a conversation at a bar at a conference.

MH-R: So is that POEMs you’re talking about?

HB: Yes. The Patient Oriented Evidence that Matters. Yeah, so the “matters” part, is the hard part. So the patient-oriented evidence, you and I understand, quality of life, survival, out-of-pocket expenses, pain. The “matters” part is that, if the information is true and patients are better off as a result you would have to change what you're currently doing.

MH-R: Hm. Mhm.

HB: So it would be a practice change as the … the last piece. That's the harder part I think for people to wrap their heads around.

MH-R: Yeah it is and it's … it's … in some ways that’s similar to what was somewhat radical about clinical decision analysis because that required … that … make … requires that you draw out as you recall, uh, a decision tree that compares strategies, um, like, um, in … you know the famous one is an early stage prostate cancer, where we're comparing doing nothing to radiation, um, or surgery. And then playing out, if you go down each of those paths, um, what are the outcomes. And as you were saying about cost utility analysis you … that's about patient values for those outcomes. And we you know, we talk so much about preference sensitive, uh, problems, where it really makes a difference what you do, how the patient feels about it. So it's not only, um, how good is the evidence? Is it worth making a change about? But then this other piece of really listening to elicit patient values and help patients think through “well if I go down each of these paths, where … where what do I get in terms of side effects what do I get in terms of increased length of life,” or, um, as our favorite cost effectiveness folks like to talk about quality adjusted life years. And that quality adjustment pieces is a big piece. So and I sometimes think that background gets a little bit lost sometimes and that theoretical background is … as we tried to, um, move this along in an … expose the common sense of good evidence to…

HB: And it's not just the common sense of good evidence. It's also about coming back to … at least for clinicians, most clinicians went into medicine, because they want to do well. They want their … they want people to improve their lives. And … and how do we do … well it’s not by the things that we can measure, it's in fact by the things that our patients come in with. They come in pain and we try to alleviate that. They come in because they've got a disease we try to manage and … and improve their quality of life. And it really comes right back to the whole reason why most of us went into medicine in the first place. And … and the best way to do … provide patient centered care is to provide patient centered care.

HB and MH-R: (laugh)

MH-R: And you do it well. (laughs) Yeah and MSU has always, College of Human Medicine has always been, um, a place where new ideas get absorbed into the curriculum pretty easily. Um, and that happened with … with both clinical decision analysis and evidence-based medicine really from early on. You came in ’89?

HB: Yes.

MH-R: Yeah and Arthur Elstein and myself and other people had already started working on a version of focal problems in probably ‘82 or so. Um, under a grant from the National Library of Medicine to really try to incorporate this into, um, our undergraduate medical education. And you did some really good work with, um, getting the evidence-based medicine into the undergraduate curriculum or the residency…?

HB: This was in the undergraduate curriculum…

MH-R: Okay.

HB: So, for many years we really had a … an epidemiology course. And that was about it. Students hated it. The faculty hated the fact that the students hated it.

MH-R: (laughs)

HB: But really didn't have a perspective as to how to improve the course. My department Chair and I, because of our interests in evidence-based medicine we were able to get a grant from … from HRSA, the Human Resources and Services Administration. To create a curriculum track in the third year, that we called Critical Appraisal and Analytic Medicine. Horrible name, but I don't know how that came about. I'm sure there's a story there somewhere. But it was really intended to have two components. The first part where the students would learn how to critically read articles. Then we would turn them loose into the clinical years and have the chance to have questions that arise that they had inadequate answers for. And then they would come back and work in groups, to try to come up with an approach to scholar … in a scholarly manner, how they would actually study this problem. They would actually have to come up with a research methodology, identify validated instruments, and … and actually come up with a plan. We didn't actually require them to do the studies until several years later, when we realized that many of them were doing it anyway. So we … so as a result of this we actually have a situation where our students are now required to do research, even though, please don't tell anybody this, uh, that even though our curriculum committee hasn't signed on to the fact that, uh, that we require it, but it is a required course. Well what we learned though, is that many of the students coming in really needed a different framework and that wasn't coming from the epidemiology course. So we met with the epidemiology department, the course director and helped them to rethink what it is that they want in terms of educational outcomes. Because they were teaching this is if they were trying to train epidemiologists. And it was perfect for that, but that's not what we were trying … that's not what we were asking our students to do. So they ended up restructuring that course. We … they got more curricular time chunked up into some extra time in the first year as well as some time in the second year. In the first year dealt with the foundational issues of “what does it mean to be a clinician in a public health environment,” “issues around data reliability information sources,” those kinds of things. And then in the second year they would actually apply many of those concepts to specific kinds of articles. Which really facilitated that what we did in the third year and actually allowed us to accelerate to really require students to do research projects. So this was really a win-win. Students, um, report of the quality of the teaching and the … it's not perfect but it's far, far better than what it used to be. And it's about where it is on a national average.

MH-R: Yeah. Yeah and I think we talked earlier, you've had some … some students who have found that this puts them head and shoulders above some other students when it comes to looking at their residencies.

HB: Yeah so these … these are research projects they're … they're done in groups. These are students, their … it's their questions. So they originate the question, they have to go through the IRB, they do original data collection, and we've had a number of students come back from the residency interview trail saying “hey, you know what this was embarrassing, because we were in a group interview and they happened to see my CV and … and they asked me about the … about the research project and that dominated the whole interview.”

MH-R: (laughs) Which is a nice problem to have.

HB: Yeah, yeah.

MH-R: Yeah. It's really. And they have it down—they get below the surface through that process.

HB: They understand the messiness. They have to do projects that involve real life people living in the real world. So they have to deal with the messiness of the information sources and the sources of the data and how to … how they might understand them. The limitations of what kind of conclusions they might draw.

MH-R: Yeah.

HB: And planning for future next steps.

MH-R: Right, right. So as we think back we've all … we've both been at this stuff now … (laughs) oh going on thirty years a piece.

HB: Yeah.

MH-R: And now it's become mainstream, a lot of both shared decision-making and evidence-based medicine are taken for granted and they’re still in our curriculum and have been all along. And really have not gotten that much pushback. But the pushback I've gotten from… got in the early years at least was shared decision-making, was really from physicians, because the idea of collaborating with patients around, um, the notion of here is the … here's the information … here is the data and you can go … dramatically different directions and end up making one choice or the other. And they're both legitimate. And to really collaborate that about that. And I remember we, as you know, we have done a lot of work at MSU on developing decision aids, which really are those mostly booklets, certain sometimes DVDs that we provide to patients that give them the evidence to really think about. And I remember you kindly, um, had offered to…

HB: Uh oh, my words are going to come back and haunt me? (laughs)

MH-R: Yeah, yeah. You're words are going to come back and haunt you. Yeah the stable coronary artery disease, um, problem where whether you get—when stable coronary artery disease, like not giving you massive chest pain that's about to give your heart attack but … but about some … angina. And the evidence shows that length of life is the same, whether you get a stent an open that little artery up or whether you leave it alone. And of course this is very disconcerting to … often to patients and a physician. Say what if you've got a blocked artery. Surely if you pop a … a stent in there to prop it open, things will get better.

HB: Or bypass it even.

MH-R: Or bypass it. Right and … and, um, so these different options are ones that have consequences. Obviously for side effects of the interventions of the surgery or even … even the cath and so you kind of … you ended up working with a patient, I remember who had her, um, two specialists telling her she really needed to get to the cath lab, and you…

HB: So we had, we sat down and had a long conversation. Actually a couple of long conversations. And she and I, she just said, “this just doesn't feel quite right. I feel like I'm under pressure and I can't decide between bypass versus stenting,” and well let's … let's have a slightly different conversation and talk about all of the options. And she was quite surprised about that. And when I provided her with a homework assignment to actually go through the DVD and the booklets, she came back and was absolutely astounded on the outcomes. Because nobody had shared that with her. So she had other concerns too because of, um, a co-morbid condition that would have complicated any of those. She came back and said, “you know, I think I just assume stay with medicine. I don't like taking pills but I think the other things are a whole lot worse for me.” So, so she's been on medication management. I just saw her husband a few weeks ago in the office, and I think she's got a visit coming up in a few weeks, but she’s still on medication. She's now about seven or eight years out with no problems whatsoever.

MH-R: Yeah, yeah. And she's one of the brave ones you know, who was willing, with your support, to … to say to her specialists, “no, I even though you know … you know it's a narrowed artery, but I have looked at the evidence and…

HB: When she went back and talked with her cardiologist it was, it was really fascinating because the fellow, the cardiology fellow was the most angry. The senior cardiologist said, “well listen patients have a right to make decisions about what they want and in this case the outcomes are reasonable,” so you know the cardiology fellows you know what they need though. They need experience in order to be … become independent in that and so … so they're looking at things often from a very different perspective but once you get, get away from that you actually try to take care of what the patient needs, that's when the cardiologist’s professionalism really came through.

MH-R: Yeah and it's a big shift from the sort of intuitive, if there is a blockage we must open it up, to saying well but let's look at what we know from the literature about what happens down the line in terms of the increased or decreased risk of dying. Or if it's cancer getting recurrence or, or whatever. Yeah which is now … sort of gradually—I mean, no I say that it's become routine, but it's, as sometimes happens, it's shared decision-making of those sorts of things gets into guidelines more quickly than it gets into everyday practice.

HB: Yeah. I think because of the everyday practice, clinicians are concerned about time and efficiency.

MH-R: Absolutely.

HB: They have a schedule and every fifteen, twenty, thirty, forty, minutes whatever that schedule is they need to make sure that they are staying reasonably on time. And these can be lengthy conversations. The good news is, you can take resources like decision aids, whether it's an online interactive type of program or a simple booklet. And you can give them homework assignments, you can have the conversation sequentially, in most circumstances, you know if you've got somebody that's in the emergency department with crushing chest pain and under … have it… that's not the time for shared decision-making.

MH-R: You’re not going to be making shared decision-making anyway.

HB: Yeah, that's right.

MH-R: Not going to happen.

HB: So… there's a time and a place for this. And most of the time you have a luxury of being able to walk through this and let people stew on it and think about it before they make decisions.

MH-R: Right, right. And in fact even though it feels like “oh” to most clinicians, “this is going to take me forever, I'm not prepared, I don't want to,” the randomized trials of shared decision-making that are in the Cochrane review of decision aids, show an average of about a minute longer in the … to do the shared decision-making with some kind of tool, like you're talking about for the patient to go home and think about it, and talk to their families. So that … that is, that I have to say that's the biggest pushback.

HB: Yeah.

MH-R: I don’t know what you get. Well sometimes I … I suspect, um, clinicians feel that they're being told they're not doing it right or there's something else they have to learn. I don't know what kind of… maybe you don't get that particularly anymore…

HB: And there are some structures on how to know whether you're doing true shared decision-making. There’re checklists and things of that nature but fundamentally for most clinicians, if you've been caring for patients for a while you can be reasonably intuitive. And in terms of the overall approach and it's not abrogating decision making it's actually trying … and it's not about just informing people of the risks and benefits. It's actually trying to understand what is it that is important to the individual, and then supporting them in being able to maximize that … that goal.

MH-R: Mhm, mhm. Yeah I think that's a really true and I think as people get more familiar with these ideas, clinicians and patients, I think it's becoming something of an expectation that they will talk to each other. But of course then the other big pushback is the Internet, and the way the Internet-prepared patient who may show up in your office and really take your time.

HB: Well you know those are actually fun because you know the … the Internet can be a great source of good and evil. And we know that there are sites that are fake sites that are out there and we have to be real careful about that. But most of the … the legitimate sites people find, and they often come in with better questions and better understanding of what's going on. The bigger challenge to me is the one, the patient who comes in with a set of new symptoms and they come in, I call it “pre-diagnosed.” They've self-diagnosed themselves based on what they find in a, on a website. And the challenge there is to say, “you know you might be true, you might be right but let's just step back a little bit and let's look at the full context.” And there are different set of skills in how you address the person who is using this as a set of resources. And then once … once you've moved beyond the diagnosis part and they come in with treatment alternatives, sometimes they come in with very reasonable things that you and I haven't heard about, because they're looking at what's going on at NIH or what's going on at MD Anderson, with regards to some of the personalized medicine approaches. And I think that's … that represents a potential challenge to clinicians especially those who are in the more traditional realm, because the patient now is … has become the expert, right?! They’re certainly, they've always been experts about themselves but in some ways they're also, because they have a vested interest in their care, they're now an expert about that as well. And I think that's actually an okay thing.

MH-R: Yeah. I think that's really great. And I have to say, I do think, as I interact with our students that because they're part of contemporary culture, to them the answers are all on the Internet. Of course that's another, that's a, that’s a story for an … a difficulty for another day. But I do think over the time we've been working on this, that the ideas of a clinician-patient negotiation are no longer strange and the note, and the idea that there is a lot of good evidence out there for you to get if you're a patient is just starting to be, um, established.

HB: Yeah. I … I do think there's a bit of a caution though. And that is, that, um, we have to be careful about who is asking the research questions these days.

MH-R: Yes.

HB: And how is research funded and you know, we've talked in our … in various other settings about publication bias for example, where, um, studies that might not be favorable to an intervention may not see the light of day.

MH-R: Right.

HB: A great example of that is the data on, um, Oseltamivir in the management of patients with influenza. About half of the data have never been published and when you take the data that haven't been published, the studies themselves are high quality, would pass muster going through the peer review process, and when you incorporate all of those data with all of the published data, it turns out that the overall effectiveness ain't so great. And yet patients will come in, asking for Oseltamivir or other comparable agents. The CDC has certainly stockpiled all of this stuff. Um, and it's, and it’s largely because of selective publication. And … and so we have a real challenge when profit is the motive around the kinds of questions that are asked and the data that are released. Patients may not have the sophistication to understand that aspect. And so there is this … this challenge that …that clinicians need to be aware. By the way most clinicians don't think about that either. They just assume that because it was in Lancet or the New England Journal it must be true.

MH-R: Right.

HB: So we have to go back then to our original story. (laughs)

MH-R: We do, we do. And teaching skepticism to both medical students and patients may be the central thing that we have to keep doing through these … these cases and writing these tools.

HB: Yeah and the other part is who they study. Most of the time, I care for individuals. So like my patient with new onset coronary artery disease, new onset angina with other co-morbid conditions. I have patients with diabetes, hypertension, chronic obstructive pulmonary disease, severe arthritis, asthma, you name, I mean a whole series of things. And if I just focused on the one thing in the study, I might be able to treat that really, really effectively but, oh by the way probably worsen at least one of their other co-morbid conditions and maybe adversely affect their quality of life as well. And so, so this is one of those application challenges that clinicians really struggle with.

MH-R: True.

HB: Because not only are they trying to do what the study says, the guidelines often are constructed around patients without co-morbid conditions. And all of the incentive plans around pay for performance the quality improvement activities also focus on the person with single co-morbid conditions. Whereas you know, when we engage a conversation with the patient and focus on whatever aspect of quality of life and survival that are important to them, we might make very different choices.

MH-R: That's true. And … but the guide … but frequently these guidelines are doing things like including patients on… in the guidance overall of what goes on in the organization. Both for research and for practice. So, the general … the whole general framework has … or the … the public has moved on to incorporate these things but still the fundamental challenges are still there.

HB: So there's still a lot of perverse incentives even though we're starting to see some general… I think it will take some time for that … for people to realize that oh maybe there is benefit to be had by focusing on functional status, and quality of life, and as opposed to micro measures of disease management.

MH-R: Oh I think we continue to, I think our challenge is what will keep us busy for as long as we are interested in doing this work. And passing it on to our junior colleagues.

HB: Yeah. And fundamentally I think, you know, if … for clinicians who really care about their patients. This is, this is you know independent of all of the other things, this takes you right back to foundational things. You can use all of these tools to try to enhance the decision making that … that takes place in the course of an office visit, or a series of office visits to help our patients maximize their own personal health goals.

MH-R: Yeah you know. So there's the agenda for the future.

HB: Yeah.

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

No Easy Answers in Bioethics Podcast

The Medical Ethics Resource Network of Michigan: a History - Episode 3

November 9, 2017 Leonard Fleck photo

Dr. Leonard Fleck, Professor in the Center for Ethics and Humanities in the Life Sciences and the Department of Philosophy, sits down with producer Liz McDaniel to discuss his involvement in the Medical Ethics Resource Network of Michigan (MERN), a non-profit organization that existed for about twenty years, beginning in 1986. Dr. Fleck discusses the reasons why there was a need for such a network, and provides insight into the work they did in sharing expertise and helping individuals develop skills that were needed to thoughtfully address ethics issues within a clinical setting.

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.

MERN collageTop left image: pictured are MERN members Ray Pfeiffer, Leonard Fleck, Len Weber, and Matt Weiss, date unknown. Bottom left: a group photo of many individuals at the first MERN boot camp in Shanty Creek, MI, August 1990. Right: a MERN brochure.

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 in the Michigan State University College of Human Medicine. Today I'm joined by Dr. Leonard Fleck, Professor in the Center for Ethics, and we're going to talk about an entity called MERN. Dr. Fleck?

Leonard Fleck: Hello how are you Liz?

LM: I'm good, thanks for joining me today.

LF: You're welcome.

LM: So can you tell us what is MERN? What does MERN stand for? And how and when did it get started?

LF: First of all the word MERN stands for Medical Ethics Resource Network of Michigan. It really got started roughly in early 1986. And it started in some sort of an informal faculty meeting. My recollection is that there were three of us who sort of kicked around this idea. That was Howard Brody, who was the director of the Center at the time, Len Weber who is, who was a faculty member at the University of Detroit, and then myself. And we were we just had the idea that maybe it would be a good idea to have some sort of a mechanism for bringing together hospital ethics committees at various hospitals throughout Michigan. Because most of them were very isolated and had very little ability to provide the kind of intellectual support that was needed for members of hospital ethics committees. And so that was just an idea, a rough idea that we had. And we wondered how it would get off the ground. And we decided we would have a small conference at the Kellogg Center and we invited about thirty individuals, clinicians, folks who did medical ethics or members of hospital ethics committees to serve as a kind of basic organizing group. And that was in the fall of 1986. And that was the real beginning of MERN.

LM: Okay. So now I'm interested in when you say providing intellectual support to the hospitals and ethics committees, what that means and then that kind of ties into my next question of why, why did you want to start this network and why did you see it as a good or a necessary thing to do for the state?

LF: It was necessary because among the things you have to keep in mind is that in 1986, the dinosaurs had barely disappeared and the Internet was not existed, at least as we understand it today. There is some government thing called the internet but this was not something that was publicly available. And so in terms of having ethics committees become more informed and more able to do their work as ethics committees and dealing with some of the kind of complex ethics problems and the development of policies around those issues at local hospitals. It would be helpful to have some kind of centralized resource. And it would also be helpful to have an institution that facilitated networking among these different hospital ethics committees. And so that was there was a basic idea behind what MERN was doing. Then beyond that we had to think about how exactly we wanted to foster that networking and foster the develop-- the improvement of knowledge about problems and health care ethics. So we did several things. One was, we developed a number of what we called ethics modules, that addressed some of the specific problems or very common that hospital ethics committees had to look at. So a module that looked at foregoing life sustaining treatment. A module on form consented truth telling, and so on. One of the other things you need to keep in mind here is that nowadays probably almost every college or university offers a course in health care ethics. That's available to students, and particular students who intended to pursue careers in health, some area of health care. Back in 1986 that was much less common. And so the folks who are on hospital ethics committees had relatively little in the way of what you would call formal academic training in addressing problems with health care ethics. So that was the first reason we had for developing the modules.
Among other things we did, we put together an annual conference. It was typically, it was a two day conference. And it was a conference that typically brought together somewhere between 100, 130, 140 individuals from all around the state. And we would have a number of speakers and workshops and so on. And again this was another opportunity for individuals to meet in person, folks from other hospital ethics committees to talk about the problems and issues and challenges they had to face. And so that was the annual meeting, something that worked very well.
In addition to that, we put together something called the MERN newsletter. Which we put out on a quarterly basis. Again this is a way of just keeping everybody in touch. It was the equivalent of a paper internet of sorts. And then fourthly, we put together a week long summer intensive course in health care ethics. We had in mind when we first put that together, that we would be doing this primarily for members of hospital ethics committees in Michigan. But we thought it might not be a bad idea to advertise it more broadly. So in point of fact we would typically have forty or fifty individuals for this week long session. And probably at least a third of them came from various parts of the country. That in itself was something that was educationally valuable, that they… cause folks from other parts of the country, they brought their own experiences with dealing with ethics committees and ethics issues in their institution, into that discussion. So that turned out to be another very valuable part of what MERN was doing. We offered also a Speaker's Bureau. So those of us who were available and willing to travel to these different hospitals to do different kinds of electors or workshops and so on, this was another way of facilitating things. And we also wanted to offer the, some expertise in helping to develop hospital policies that addressed a lot of these issues. And lastly we felt it was important to do broad community education. You have to keep in mind that even though a lot of these issues nowadays are relatively well understood by a relatively large segment of the public, at that time there were an awful lot of issues that were extremely controversial. And the idea of withdrawing withholding life sustaining care from individuals in various situations was something that was done only with a great reluctance and there would be a lots of conflict, perhaps within an institution, and legal concerns on top of the ethics concerns and so on. There would have been the cases at the time. The Brophy case was one that would have elicited in the literature and in the public mind concerns about what are they doing in these hospitals nowadays. And so it's important that the broader public come to better understand what some of these issues were and how they were being addressed and why they are being addressed in a certain way.

LM: That's interesting that the conferences and events would also draw people from the rest of the country. Do you think there are other similar entities around the country at the time? Like a statewide known network or do you think this was fairly unique?

LF: No that, the one things we were relatively mindful of, was the fact that we had something very unique here. We were aware of the fact that around several large cities, New York and Chicago, I think we had in mind. There were these ethics networks among hospitals that were concentrated in that urban area. But nobody had attempted to reach out to a whole state. And so this was something that was unique, and we felt that this was a genuine public service for health care within the state of Michigan.

LM: I want to ask about maybe the logistics of how you financed the group and who made up the board?

LF: In terms of financing this was something of course that we had to think about. It wasn't as if we had some huge financial obligations that had to be met. Basically we had one person on our payroll. We had Jan Holmes, who was the department administrator, and we simply in effect bought a part portion of her time to take care of things like registering individuals for the MERN annual conference, for the summer workshop, and for the collection of dues from MERN members. One of the experiences that I had that served as the basis for figuring out the finances of this organization, was when I was in South Bend, Indiana in the mid to late 1970s, I helped to organize a hospice program there. And one of the challenges we faced, was that there were four hospitals in the community and we were concerned that each one of those hospitals would want to have its own hospice program. Which would be costly and inefficient. And so the idea I had was that we would go to the CEO's of each of those hospitals and ask them to put up something like five thousand or ten thousand dollars a year to support the hospice program at that time. Because there was no federal funding of hospice at that time. It had to all be based on community resources. And in that way each hospital had a stake and in that organization and we avoided the kind of inefficient competition that otherwise would have occurred. So with that idea in mind, I thought we're going to do the same sort of thing with MERN. We're going to ask each of the hospitals on the basis of their bedsides to contribute in annual dues, to supporting MERN. So if the hospital had five hundred beds or more the dues were typically $750 a year, and then there was a $350 dues and a $200 dues and for a nursing home or hospice programs or other non-hospital based entities, home health programs we had a $100 due structure. For individuals it was $35. And basically that money provided us with a basic budget that paid for the secretarial services we needed. That paid for duplicating phones, printing, just all that sort of basic stuff. I served as a kind of informal executive director for MERN, unpaid but somebody who just paid attention to all the nitty gritty managerial details that had to be paid attention to. As… and that basically that seemed to work very well.

LM: So what would you say was like the peak of MERN and at that time like ballpark how many hospitals and other institutions where part of the network?

LF: We had, we probably had somewhere between forty and fifty hospitals that were part of the network. And probably about one hundred individuals who were individual MERN members. That would have been our peak size and that would have been in the roughly the late 1990s and the early 2000s.

LM: So MERN began in 1986 and when did it cease to be?

LF: It ceased to be roughly, and it was kind of a slow dying process, somewhere in the vicinity of 2007, 2008, 2009. And basically here are the sorts of things that contributed to, I guess the word of the undermining MERN and its mission. There is nothing nasty about this. It was just the evolution of the health care system. And the evolution of knowledge about medical ethics and so on. And so a lot of the things we did as part of our work, were really unnecessary. So the modules were much less necessary as the years went by, because there were so many textbooks and courses that were offered on healthcare ethics. So the modules simply duplicated that. But basically what happened was, that we began to see by certainly by the late 1990's, the beginning of the consolidation of the healthcare system. So what they're merged these different networks of hospitals in Michigan. So you have Spectrum Health on the West of Michigan and you got Beaumont, you got Henry Ford and the Mercy Corporation. You have all these different hospitals there were started banding together and forming one more or less corporate entity. And then what they said to us was well we shouldn't have to pay for each of the hospitals to belong to MERN because we're now really one organization so we just want to pay one $750 dues. Well that began to erode our financial strength. And so after a while that became, that was one thing that became more problematic. But the other sort of thing that happened was that these hospital systems began to hire their own in-house medical ethicists or ethics consultants, who work with the hospital ethics committees both to do training and education and to consult on individual cases. So when MERN started in 1986 the only health care systems that had their own in-house ethicists, were the two Catholic healthcare systems that are dominant within the state. Nobody else had an in-house ethicist. Len Weber from Detroit, he served as an informal consultant sort of to the Mercy Corporation. But then I mean, since then Spectrum Health has its own internal ethicist. Beaumont has its own internal ethicists. Henry Ford, the Catholic hospitals continue to have theirs and so on. And so again the need for having this network became, it was duplicative and less, seen as a less needed relative to the availability of in-house talent. And of course when I say in-house talent if a hospital like Spectrum, which has now ten or eleven other hospitals affiliated with it. That talent extended to those ten or eleven other hospitals who are part of that system and consequently there wasn't something much more that we could do. The only thing that we could offer was that we would of course have access to these enormous libraries of medical journals, medical ethics journals, and so on. Which no hospital could afford to have access to in the way that large universities like Michigan State or the University of Michigan would have access to. So we continue to provide those kinds of resources but it's now in a much more sporadic and informal kind of way. And so as I said, the need for MERN’s size of our board saw and gradually diminished over a period of several years. And eventually we simply had to in a formal way dissolve as an institution.

LM: I want to backtrack a little bit and just clarify for maybe folks that might not know much about how ethics committees work. So talking about how the hospital started moving more toward hiring an in-house person, are ethics committees or at the time I guess and presently usually made up of people who are in more or less a volunteer position or are the employees of the hospital?

LF: The hospital ethics committees are mostly made up of individuals who are employees of the hospital, but they are volunteer members of the ethics committee. That is they do not get any additional pay. This is something that they simply do as part of their professional role on a volunteer basis. Hospital ethics committees are formal organizations so individuals are in fact chosen or elected to serve on the Ethics Committee. Typically these ethics committees are very diverse in terms of the types of individuals, the particular health care roles that are occupied by individuals on those committees. So they have some number of physicians, but you'll have nurses and social workers, pastoral care. Sometimes you'll have somebody with a legal background, who will be part of those committees but in general that's, that's the kind of makeup of the committees. Part, one of the reasons why a number of the very large hospitals and hospital systems have hired their own ethicist, is that ... is that a practical problem that those committees faced, is that when there was need for an ethics consult, typically in the past that meant we're going to bring the whole committee together. And the whole committee who might be ten, fifteen, or twenty individuals, it's extraordinarily difficult in a hospital setting, where everybody has their own job to do. To get that many people together to talk about a case. And so some ethics committees would say well we're going to have two or three of our members do the bedside consultation and we'll kind of rotate their responsibility. But even that was sometimes kind of awkward, given that these individuals had other responsibilities. They had patient care responsibilities and they couldn't easily just walk away from those, in order to have a meeting that might take an hour, or two, or three, depending on how complex the case might be. And so it became much more, it became easier and more efficient to actually hire somebody, who would be the prime individual, who would do the bedside work oftentimes with one member of the formal committee. Talking to family, talking to the patient, talking to various caregivers involved with that case to get a sense of what it was all about. And in fact to make oftentimes a formal recommendation of what was an appropriate decision to make with regard to that particular case. For the most difficult cases where the most, there is the most complexity and the most conflict among members of the family or with caregivers and so on, it would then be the case that they would call a meeting of the entire committee, to talk to, talk through that case and sort out all the complexities of it and to perhaps meet with family members and so on. But otherwise, it's more efficient to use the hospital ethics consultant.

LM: Thanks. So we're talking about an organization that existed for about twenty years right? And, and through that time period a lot of significant changes were happening just in even, in just our society. So if you had to say maybe one thing that was the most important accomplishment or most meaningful accomplishment what comes to mind?

LF: It's, it’s hard to identify some one thing that was most important. Overall the thought I have is that MERN did, what it was essentially designed to do for the twenty or so years of its existence. It brought together provided expertise and networking mechanism for most of the ethics committees, hospital institutional ethics committees that existed in the state of Michigan. It got people comfortable with talking to one another, with sharing policy, sharing information. It helped provide individuals with skills that they needed to address thoughtfully and sensitively the kinds of ethics issues that occur within a clinical setting. And in doing all of those kinds of things I think that was overall the most important sort of thing we did.

LM: Do you have any funny stories or personal anecdotes you want to share?

LF: Oh the one personally that I can think of is that my partner Jean Edmunds is somebody who actually attended three of our summer intensive workshops. And so the last of which was in the year 2000 and so this was, this was somebody who turned out to, ended up being my partner. My what I refer to as my partner in life and love and labor. And she's just, and that was that was probably the most personal and best thing that came out of our summer workshops.

LM: Awesome. Well thank you so much for joining us today on the No Easy Answers in Bioethics podcast. Please visit our website for more information and some more historical tidbits about MERN.

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

The Patient Preference Predictor: Tomlinson and Stahl - Episode 1

September 7, 2017 Devan Stahl photoTom Tomlinson photo

Center Director Dr. Tom Tomlinson and Assistant Professor Dr. Devan Stahl discuss the Patient Preference Predictor (PPP), a tool they are developing that could potentially supplement advance directives or surrogate decision makers for patients, or that could aid decision making for the "unbefriended" patient who has no family or friend to make their wishes known. Could the PPP be even better than a patient's family member at predicting what a patient may want in a given scenario?

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 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 we're joined by Center Director Dr. Tom Tomlinson and Center Assistant Professor Dr. Devan Stahl. Dr. Tomlinson and Dr. Stahl discuss the patient preference predictor, their work in progress that relates to making decisions regarding patient care and that has potential to be a tool that could supplement advanced directives and surrogate decision makers. Let's have a listen to learn more.

Tom Tomlinson: Well hello my name's Tom Tomlinson, I'm the director of the Center for Ethics and Humanities in the Life Sciences at Michigan State University. I have been working in bioethics for thirty- five years, it seems longer sometimes.

Devan Stahl: And my name is Devan Stahl. I'm an assistant professor of Clinical Ethics here in the Center for Ethics and Humanities in the Life Sciences and I have been here for two years, so not quite as long as Tom.

TT: [laughs] I hope you will be here as long as I am.

DS: Yes, I hope so too. [laughs]

TT: So I'm going to start us off. We want to talk today about patient preference predictors or P.P.P. No snickering please. So what our patient preference predictor is, so what’s the idea behind them. So the idea is that, is to wonder whether or not it's possible to use a nationally representative sample, probably a very large sample of people, to see if there are associations that you can find between their preferences regarding a variety of life sustaining treatments at the end of life, or if they are demented, say, and various demographic and other characteristics that they might have. So that, um, if such if a patient were to be in a hospital, say, and you didn't know anything about them, you'd be able to use the information you did have about them—their age, their background, their race, their educational level, their income, you know a whole variety of factors that might be relevant from the statistical point of view, so that you could predict, with some degree of confidence, what they would want with regard to being put on a ventilator, say, or with regard to what they're going to be resuscitated if their heart stops. So that's the basic idea behind a patient preference predictor, is the potential usefulness of such a tool, you know, in the hospital or other health care settings.

DS: I'll just add in there that, and I think we’ll come to this when we talk about some of the debates about the P.P.P., but, um, so the sociodemographic factors that people would typically think of in a survey will be applicable. We might also ask about their current attitudes and values. So, you know, what kinds of things do they value and how can we sort of quantify that, or qualify that, for future use of the P.P.P. We might also even ask about their relative personal experience with medicine. So if a person has ever been medically hospitalized or if they have experiences caring for somebody who's been incapacitated by their illness that might affect how they, sort of, imagine their future being incapacitated and needing medical care.

TT: Yeah, or if they have a chronic illness, or something like that, which might intuitively at least might be associated or have some influence over their attitudes toward various life sustaining treatments.

DS: Right, and then we'd also ask things, you know, like what do you value most and we'd have to, we’re figuring out ways to ask that. But if someone is particularly religious and that might influence how they respond to these or, you know, that family’s the most important thing for them, or maybe it's not …so those might be also things that we can ask about to help get more refined about the kind of person we're dealing with and how we might generalize information about particular groups of folks.

TT: So, um, you know just from a methodological point of view, there are huge complexities and difficulties in the way of actually accomplishing this. But I think for today we're going to, sort of, set those ones aside and assume that it is possible to construct something like a patient preference predictor with some degree or another of reliability.

DS: Alright, so Tom, I bet people are thinking, well why do we need something like this because we already have these things called advanced directives. We have living wills in which you are able to say exactly what kinds of treatments you might want in the future if you were to become incapacitated and those are documents that our doctor should be following, and we can even assign certain people, so surrogate decision makers, to be our proxies during that time so people that are close to us that we think could make good decisions for us, you know, that's a sort of really easy way to get across what we might want in the future so why would we need something like a patient preference predictor, if we have these really solid documents saying exactly what an individual would want.

TT: Are you asking me or you going to tell me? [laughs]

DS: [laughs] Well I might tell you, too, I just wanted to phrase it as a hypothetical there, but I think we can think of a lot of good reasons why this might be helpful beyond advance directives. So first to just say, most people don't have advance directives. Only twenty to thirty percent of the population has even filled out a living will and that's after decades of really promoting the living will.

TT: So the federal Patient Self-Determination Act was passed something around early 1990s, maybe even 1990, which requires hospitals and health care institutions to ask about peoples advanced directives. So there's been an effort ongoing to encourage the creation of advanced directives for at least that long.

DS: And, you know, numbers have gone up with, when there's been a big push by certain groups to kind of try to get more people to fill out these documents and sometimes it works, but in general it just seems like most people don't have physical documents stating what it is that they would want in the future, so this is going to work for, you know, most people because most people don't have advance directives so we need some other kinds of evidence about what they might want. So we also know that even when patients do have advance directives, sometimes they're vague, so it's hard to predict...

TT: Sometimes?

DS: Well, lots of times, okay. [laughs] Lots of times they're vague and Tom and I know this from working as clinical ethics consultants in our hospitals, that it's very hard to predict exactly when you're going to need these advanced directives. So what are the conditions you're going to be in when you lose capacity? That's hard to predict and it's also hard to really wrap your mind around the kinds of life sustaining treatments we're talking about. So most people still don't really understand what it means to be intubated, what it means to be on a ventilator, what a feeding tube does. These things are, they're complex and they're hard to understand. So when we get these documents they don't necessarily apply to the specific situation in which the patient’s in, or it might be unclear exactly what they meant in those directives, so they're vague.

TT: Like so for example, in a POLST form—a physician order for life sustaining treatment—one of the options people are given is to say whether or not they want to be resuscitated, if they have a cardiac arrest. And so someone might check “no I don't,” but that form doesn’t tell you sort of what scenario that they were playing in their head when they made that decision, and so you don't know whether or not what they intended to communicate when they checked that box in fact applies to the situation they're in now. Maybe they were imagining that they were, you know, at the end of life with some terminal illness and that's when they didn't want to have resuscitation, but that means this is in fact not the situation they're in currently, but we have no way of knowing what they meant and the advance directives can't tell us.

DS: Right advance directives typically don't give rationales. Right? You don't—that would be, you know, sort of a long form. Usually it's just a check box and so we have no idea why they checked that particular box and what circumstance they were imagining. Most people imagine the end of life, but in most states advance directives apply whenever the patient loses capacity, not just at the end of life, making it a little bit more complicated when they apply and when they don't. And so we also know that in reality physicians don't pay a lot of attention to advance directives. Even though we push them and we say that they're so great, physicians tell us that they don't seem to influence their recommendations very often maybe because they're vague...

TT: You know, but also because I think, you know, physicians’ tendency is to is to continue doing whatever they think might be useful and when they get to the situation where continued treatment is not going to be useful or the next line of treatments are not going to be useful, that's when they begin asking about the advance directives, because they are hoping it is going to support a decision to stop.

DS: Right, so we also know that most families don't talk about the kinds of decisions that are really relevant to making these end of life decisions or decisions about life sustaining treatment if the patient's incapacitated. It’s just kind of a cultural thing—people don't like talking about these things and even though we push for families to have these conversations, maybe over Thanksgiving, it's just not a very pleasant conversation and so a lot of families just really have no idea what their loved one would want.

TT: And just as an addendum to that, very few people talk with their physician about their advance directive, either.

DS: Right. So we know that—we also know that families are not great predictors of what patients say they would want. So in these studies where, you know, we ask a particular person what they think they'd want and then we ask the family what they think they would, that patient would say, families aren't great at predicting that. They're maybe only slightly better than chance. TT: Yeah, but better than the physicians.

DS: Better than physicians, but not, you know, nowhere near one hundred percent. Maybe more, just a little over fifty percent, and that's even when they have had a conversation about what the patient might want at the end of life. So families aren’t really great at predicting the sort of exact preferences of that patient for particular treatments.

TT: But then on the other hand when you asked patients why they want families to make decisions for them one of the reasons they give is because they believe their family knows what they would want.

DS: Right, so they don't talk about it and families aren’t great, but we still have this presumption that our family members would know us best, would know how we would choose, and that might be a faulty assumption. We also know that it, um, making these kinds of decisions on behalf of somebody else really stresses people out. So when it's up to you, and often physicians put surrogates in this decision, this kind of decision-making. You know, what do you think that your father would want in the situation and if you don't know, or even if you do know, it can be a very stressful situation--it feels like you're making life and death choices for somebody you really love and that's hard on people.

TT: And of course this is also one of the rationales given for people completing advance directives, is that it lifts a burden off family members who have to make these really hard choices and if they somehow know what mom would want, it would be much easier on them and so mom is motivated then for her family’s sake, for completing the advance directive, hoping that will somehow make it easier.

DS: And surely for some families, that does, but that's just not universally true. You know, even if you think you know what Mom would have wanted, to make a decision that leads to the end of her life is still a stressful hard decision to make.

TT: Feels like you're killing Mom...

DS: It can feel like that, yeah. So there is some evidence—so the P.P.P. is in its infant position right now. We haven't done a lot of, there hasn’t been a lot of survey data on it, but there is some evidence to suggest that it actually might be better at predicting what a patient would actually want than family members themselves. So we have kind of this nascent data showing us that it might be helpful in situations, which it's not super clear to families or surrogates what the patient would want.

TT: So let's imagine that's true. Let’s imagine that we've got a P.P.P. instrument that at least across some range of interventions and clinical circumstances can predict what people say would have said they would or would have wanted. How could, how can we use that? I mean, should we use it? I mean how should we use it? So, and just to start off, one thing, one situation that occurs to me that you and I have seen quite a bit is that, you know, an elderly patient in the nursing home probably pretty severely demented who has no family, no friends, and family have long since died or drifted away, so there's nobody who knows her. She doesn't have a living will or durable power of attorney. She'll probably end up with a court appointed guardian who knows nothing about her. And so, if you had enough information about her, from her medical record and other things like that, with a P.P.P. you might be able to say, with some certainty, whether or not she'd want to be put on a ventilator. And it could be very useful information in some of the situations we've been involved in.

DS: That's right. We call these patients “unbefriended patients,” which is actually a terrible term—we need to come up with a new one. But they're “unbefriended” meaning they just don't have anyone to speak for what kind of person they were and what they think they would want. So in those scenarios it's very difficult often to get any physicians to agree to stop life sustaining treatments because they're afraid that they just don't know. There's really no evidence of what they would want and those are sometimes the toughest cases because, like you said, the court appointed guardian will have never met this patient so they don't know what they would want either. And then we have a—can often get involved in the courts and it can be complicated.

TT: Right, so I mean, the court appointed guardian may be pretty risk averse about making these life-or-death decisions and so the default option is just full speed ahead. Out of P.P.P. the evidence that a P.P.P. could provide, might actually tilt the balance back in a direction that’s more likely to be in accordance with what that person would want.

DS: So that might be the sort of most obvious use of a P.P.P. We also certainly have experienced families who are asked to make these decisions for a patient who doesn't have an advance directive who really, like we said before, have never had this kind of conversation and really just say “I have no idea what my family member would want,” and so this could provide them with some extra kind of data, some empirical evidence showing what the patient might have wanted and it can give them some more assurance, if they have no idea.

TT: And you can also, I think, that information might also serve as a way to draw them draw their attention out of their grief, which may in fact incline them to continue to do everything. You give them some other focus for their decision making, which might help them make a decision that's probably going to be more in line with what the patient would want.

DS: Right, these are stressful times on families and often times being asked to make a really important decision is difficult in the midst of that grief. We also know that lots of families are very conflicted, you know, maybe they've had the conversation, maybe they haven't, but when it really comes down to it, what that person would want, and the particular circumstance is difficult, and so you might sort of waiver back and forth—“well, you know, my loved one said this but they also said this and at the end of the day, I don't know what that means about the specific treatment that we're talking about, whether they want it or not,” and so the P.P.P. could help just to give some more evidence to that family as well. So there also might be families though that do think they know what the patient would want and yet they're, they remain conflicted only because it's a tough decision. And so having that kind of extra evidence would help them, as well, even if they aren't as conflicted as the previous family—one more piece of evidence to say “yes I'm doing the right thing,” and that can be a potential comfort to families.

TT: So how about another situation. I'm imagining a situation, which we also sometimes encounter, of a patient who has an advance directive that is pretty specific about not wanting something, whether it might be a ventilator or whatever, and they have a durable power of attorney and the durable power of attorney, who may be a family member, often is, says “oh don't pay attention to that.” You know, “she didn't really mean that” or “you know, we've since had some other conversations and so I'm pretty sure that’s not what she would want, if we could ask her.” Can I use the P.P.P. there to determine what the likelihood is that the durable power over attorney is really representing what the patient would want? If I can produce evidence that confirms that the patient would want exactly what she said she would want.

DS: This is where I think it gets a lot more controversial. So initially, I think the P.P.P. was conceived as a supplement to shared decision-making between the surrogate and the clinicians, which is ideally what we want—is everybody involved helping to make the right decision for the patient. To override what a surrogate, or even a DPOA would say, gets you into much more treacherous territory, there. Because, you know, sometimes it is the case that, as we said, advance directives seem to say something, or we might interpret they're saying something, we might interpret them to be saying something, but then a family member or that durable power of attorney can say “wait a minute I was there when she filled out this advanced directive, we had a conversation about it, and actually how you’re interpreting it is wrong.”

TT: That’d be the exception rather than the rule though, right?

DS: [laughs] It would be. Yeah, sometimes people who are assigned as a surrogate or a DPOA flagrantly disregard them, in favor of their own preference, which is not what they're supposed to do. Really, the job of the surrogate decision maker is to make decisions that the patient, him or herself, would have made—not to make decisions for them, but to make decisions they would have made. And so when that's their obligation and they're making decisions the patient wouldn't have made, or we have evidence to think that they're making decisions contrary to what the patient would have wanted, that's when it's, you know, you really have to get with that surrogate and remind them of their responsibility and potentially even remove them as a surrogate, if they're not making good decisions for the patient that the patient would have made.

TT: When I said I mean, I want to back up a little, because I want to make a distinction between using the P.P.P. to override the surrogate’s decision, or using the P.P.P. to advise the surrogate’s decision or to maybe even sort of confront. This may be too strong of a word maybe, but so not override because to P.P.P. is not going to have any legal authority, certainly. Advanced directives do have at least some legal authority, so we're not going to do that, but we might be able to say “whoa wait a minute, you know, we have reasons to think that given the kind of person your mother is, what we know of her, at least, she would not want what you're asking us to do, so let's talk a little bit more about what your reasons are for thinking she would want this.” So there would be a way of sort of confronting the surrogate with evidence, some evidence, that indicates that they might not be quite right about what their family member would want. Is that, would that be okay?

DS: Yeah, I mean I think then you get into the logistics of who is going to bring that up, and how are they going to bring it up, but you know it might be that the physician or even a clinical ethicist would meet and this would be a segue into that conversation. Because those conversations are hard to start without being confrontational. Right so, you're sitting down, you're thinking in the back your head we just don't know that you're making the decision that this patient would have made. How do you address that? And maybe one way you can address that is to say “you know we have this other kind of evidence, what do you think about that, and is your mother like this group of people?”

TT: I mean so “the evidence we have suggests that people somewhat like your mother would want this. Rather that, so let's talk about that, would do you think about that?”

DS: Yeah, it would just have to be done very carefully. But it could potentially be something to be brought up in those kinds of conversations, which are OK. Well then let's segue from there into what are the debates about P.P.P. You know, what might people say against it, why might people not want to use it, sort of maybe on theoretical grounds, but also really practical grounds. So what do we know about the detractors from this.

TT: Well also, so one of the, one of the points that people make is that the patient preference prediction is not—the process is not advanced, it's not the creation of an advance directive. Now when someone creates an advance directive, they go through an entirely different process than we use when we’re applying or developing the P.P.P. So in the P.P.P. we might discover that African-Americans are more likely to want aggressive care in the end of life, say, but when an African-American completes their advance directive they don't choose certain options because they're African-American. They don't say “oh, well because I'm black I think I'll do this.” They choose it for much more personal reasons, the same kind of reasons, largely, that other people will have. And so you can't think of the P.P.P. as representing or somehow replicating the process of developing an advance directive. I mean the other disanalogy is that certainly when we're appointing a durable power of attorney, selecting a family member to represent us, we are not just, we are acting as an act of trust because they’re our family, because they love us. We trust them and we also care about them, you know, we want them to have some role in making decisions about us because we're concerned about how difficult it may be for them and recognize perhaps that that difficulty may justifiably lead them to make decisions that wouldn’t be exactly what we would want, but we also care about them so when we create the advance directive we're kind of doing two things: we're entrusting our family to make decisions for us because we love and care for them, we're also trying to hoping that they will also take into consideration what we ourselves may have said we wanted, but we recognize that there may be a tension between those two things, but we're going to trust them to figure out how to resolve that tension. So the P.P.P. doesn't do any of that. So how can you replace an advance directive?

DS: And maybe it shouldn't. So I think we said in the beginning, though, that you know this is actually most helpful as an aid in the decision making process and not as a replacement for an advance directive, or as any way potentially overriding advance directives. But you're right that this, you know, the granularity or the particularity of an advance directive is probably going to be more helpful than sort of generalizations about sociodemographic groups. So in that sense, it's, I don't think it's meant to replace the advanced directive. And the logic of it is certainly different, so that's something we'll have to think about and again there's all these methodological problems that you mentioned at the beginning of how exactly we get sort of representation and what that will look like. So it's something to think about as the P.P.P. kind of thinks about what it's going to ask and how it's going to ask it.

TT: I mean the other, I'm not sure this is a philosophical problem, but it is an ethical and practical problem, is that when you have family at the scene—I'm not talking about the unbefriended patient who has nobody—but someone who has family, whether or not they have a group, or proper attorney, but you have them at the scene. You're making a decision in real time. The P.P.P. is going to be created by posing hypothetical scenarios to people. Those scenarios are going to necessarily be somewhat simplified and stripped. There's no way they're going to correspond exactly to whatever the medical circumstances might be of a particular person. So you lose that contextual relevance when you're trying to apply the P.P.P. You don't really know what that person would say about this much more complicated situation. You might know what they would say about that hypothetical scenario that you used when you created the P.P.P., but they might make a very different decision given the complexity of the circumstances that they're in now. We have no way of knowing that. So there's a danger, then, that we apply the sort of simple-minded algorithm of the P.P.P. the circumstances are much too complicated for it to really handle and so we're thrown back, then, on relying on the family. So if we're going to do that, anyway, why use the P.P.P.? [laughs]

DS: Right well that's a good question. You haven't answered your own question? [laughs]

TT: [laughs] No.

DS: You know, I don't think it sort of foundationally under my P.P.P. in such a way that then it's useless, but that these are considerations for you know how it gets applied and how we think through even how to construct to the kinds of surveys that would give us the data that we think is most important in these scenarios. We also think that you know we're generally talking potentially to healthy people who can't imagine what it's like to be quite that ill. It's very difficult for any of us to imagine what it would be like to be so incapacitated we couldn't make our own decisions. So we're asking healthy people who have their full capacity what kinds of decisions they would make in a circumstance they've never experienced or probably have never experienced. And we know from a lot of data that people just aren't great at predicting how bad or how good something might be so we tend to over predict how bad a circumstance will be, when in reality we might be able to cope with it. So we just know that people aren’t great at predicting their future states about health and what it will mean to them. And, you know, that again I don't think undermines everything about P.P.P., but we just have to keep in mind that in reality if people could speak for themselves in these incapacitated states they might say—they might change their minds about what they would want there. It’s just hard to know.

TT: Yeah well, to begin with they wouldn’t be incapacitated.

DS: Well that's right. So it's kind of impossible to know.

TT: And these difficulties apply to the use of advance directives, too. I mean we can’t, none of us can foresee the future with complete clarity or know exactly what we in fact would want at some later time because our preferences and attitudes and all kinds of other things change in between. So I don't, you know, this is a problem for the P.P.P., but it seems to be equally a problem for advance directives, so it’s just one of the inherent limitations that we have to work under. DS: That's right and it's been debated amongst bioethicists and philosophers for decades. Something called precedent autonomy. How could you possibly predict what you would want, what your preferences would be, what your values would be, if your circumstances totally changed? Might you not change your mind? And so this has been-

TT: We don't have a way of testing the hypothesis in the case of incapacitated people.

DS: We do not. All we have is evidence of how people do change their minds, when they do still have capacity, but they become severely disabled. And we know that people are much better, they say their quality of life is better, than they would have predicted. So we have that kind of evidence but we can't necessarily apply that directly to the incapacitated patient because by definition they can't tell us what they want.

TT: So I think, you know, some of this is kind of cautionary—that we have to be really cautious about using the P.P.P. or giving the P.P.P. an authority that reaches well beyond what its capacities are. You know, so, thinking of P.P.P.s as advisory, perhaps, rather than decisional or dispositive that they will somehow settle disputes or override family or other surrogate decision makers probably is reaching too far.

DS: Probably, and I think we also need to think about, you know, is this just information, is this somehow a default so it—could it be used as a weak default. You know, we have this information about someone like your loved one and here it is and we think that that's probably right, but if you oppose that surrogate or family member, okay, that's fine. Or might it be a stronger default? This is what we're going to do unless you give us a really compelling reason or a narrative about your loved one that would override what the P.P.P. seems to suggest. And so a weak default versus a strong default can be another way we sort of try to parse how the P.P.P. would be used in a particular situation. And of course that weak default is just going to be a little bit easier to justify than a strong default or we demand compelling reasons not to use the P.P.P. as the decision maker unless the family can give us a good reason.

TT: And of course a stronger default is likely to escalate what may already be a adversarial situation in the intensive care unit.

DS: Well absolutely, I mean we've experienced it can get very difficult, hostile even sometimes, when the clinicians are recommending one thing, the family wants another thing, and they hit an impasse and it gets—it can get heated. So, you know, using other kinds of evidence about your loved one against what you say you know about them might not help alleviate those complicated situations between families and clinicians.

TT: I mean it just occurs to me that one of the things that supports a show, and I think that you mentioned this earlier on, is that the physicians don’t really look to advance directives. So, that you can have an advance directive on the on the chart, or in the record, but it doesn’t really shape the plan of care until it suits the physician. It's, you know, views about what's possible. But we could be more prescriptive about this and expect—we should be expecting, actually—that when there's advance directive there should be something in the chart where the physician indicates whether and how that advance directive is going to be used in the plan of care. And maybe you could do something like that with a P.P.P. so that when you've got evidence via the P.P.P. about what someone's preferences might be, the expectation would be that the physician would have to say something about how that information was going to be used in developing a plan of care.

DS: That would be a really positive outcome of the P.P.P. because, as you and I both know, having these goals of care conversations with families is not only difficult, it very rarely happens. So, you know, the plan of care just goes forward. It doesn't happen until there's really nothing else to do and then the physician wants to have a conversation about, you know, what treatments and what's working and not working and what the goals of those treatments are, but really they should be having them much sooner than that. So that, you know, this other kind of evidence can be brought to bear on the plan going forward rather than just at the impasse.

TT: Right exactly.

DS: So some people might also worry that in the implementation of P.P.P. we're falling into more stereotypes. Right so, you know, might we not be sort of reinforcing potentially even oppressions generated by a society that that make it so that some people get more care, some people get less care, based on, you know, their position in society. So do we worry about now reproducing injustices in our society by stereotyping certain groups, saying “no African-Americans would want this” or “women would of a certain age would want this.” Might that worry us, and I think it could worry us.

TT: Well I think, so I think part of part of the answer goes to the methodology. So we would want to have a survey tool that gathers not just little isolated pieces of information but lots of information so that you could see how having being low income, for example, the effect that that might have on your treatment choices is mitigated by something else about you so that the picture that gets painted from the P.P.P., it's not single minded. It's complex and rich. You know, I think the other response I want to make is that it's not—if in fact it turns out that part of the reason we're going we think that we should withdraw care from this, you know, poor African-American woman without a college education, is because of the data that P.P.P. provides, and that gives us confidence if that's what she would want—that's not oppression. That's respect.

DS: Right and it might even potentially undermine some of our stereotypes. What if through this information we find out that groups that we thought wanted certain things actually don't want those things, or do want things we didn't think they wanted. So it might help us together to sort of subvert some of those stereotypes by gathering lots of information. So at least a potential there, but I think it's something that needs to be continually thought of, like you said, as we as we think about methodology for the P.P.P. Well and you mentioned this Tom, but I think perhaps the strongest debate occurring amongst bioethicist is really about surrogates and about accuracy and autonomy and, you know, we like you said don't necessarily choose surrogates to make decisions for us simply because we think they'll be accurate about choosing what we would choose. We also choose them because, well, we love them and we make decisions often with them, and so our decisions affect each other. And so they’re more complicated reasons than simply, you know, they choose what I would choose than for the reason we choose surrogates. And potentially P.P.P. is giving us more accurate information and yet, you know, if you asked me “would you want your loved ones to be able to override your own decisions?” I might say yes in a lot of circumstances and the P.P.P. simply can't account for that.

TT: Right and, in fact, there is some evidence that when people are asked whether or not they will give their families leeway to make a decision, other than the one that they themselves wanted, typically a majority will say yes I do. I think that, you know, that leeway does—when I say I give someone leeway I don't mean that they don't have to pay any attention to what I said I wanted. You know, it's not that I think that when I say my family has leeway I'm not giving them permission or saying you should always override my decision, and pay no attention to it or pay no attention to what I would want. I recognize that that's only one of the things that they might need to or want to take into account and, I’m giving them permission to make that judgment, not permission to ignore me.

DS: Yeah, I think that's right. So, you know, I still want you to pay attention to the things I always said I wanted, but you know, most of us would say we recognize that in difficult situations we would want to give allowance to our loved ones to struggle, to maybe think through and take more time so not overriding everything we ever wanted, but certainly taking other considerations into mind as they do that. Which again is why the P.P.P. is probably most useful in aid to surrogate decision-making and not as the chief way we decide for patients. Well I think that's all I had to say about the P.P.P., for now.

TT: It has been fun!

DS: It has been fun! And I hope everyone keeps up on this. We are launching our own study, it's only in the beginning stages. So we will hopefully report back once we have some more information.

TT: Yeah, stay tuned.

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