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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

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

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No Easy Answers in Bioethics is a monthly podcast presented by the Center for Ethics and Humanities in the Life Sciences. Each episode features Center faculty and their collaborators discussing their ongoing work and research across many areas of bioethics—clinical ethics, evidence-based medicine, health policy, medical education, neuroethics, shared decision-making, and more.

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

November 9, 2017
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Shared decision-making in medicine: Barry and Holmes-Rovner - Episode 2

October 12, 2017
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The Patient Preference Predictor: Tomlinson and Stahl - Episode 1

September 7, 2017
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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?

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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.