No Easy Answers in Bioethics Podcast
Shared Decision-Making in Colorectal Cancer Screening: Jimbo and Kelly-Blake - Episode 20
February 4, 2020
This episode features guests Dr. Karen Kelly-Blake, Associate Professor in the Center for Ethics and Humanities in the Life Sciences, and Dr. Masahito Jimbo, Professor in the Department of Family Medicine at University of Michigan Medical School. Drs. Kelly-Blake and Jimbo discuss their NIH-funded study known by the acronym DATES—Decision Aid to Technologically Enhance Shared Decision Making—which addressed shared decision-making, decision aids, and patient-physician communication regarding colorectal cancer screening. The two researchers provide insight into the study and its results, also reflecting on what the process of shared decision-making means to them in the present day.
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.
- Jimbo M, Sheinfeld Gorin S, Kelly-Blake K. Shared Decision Making’s Consequences. Health Affairs. 2020;39(3):537-537. DOI: 10.1377/hlthaff.2019.01783.
- Jimbo M, Sen A, Plegue MA, Hawley S, Kelly-Blake K, Rapai M, Zhang M, Zhang Y, Xie X, Ruffin MT 4th. Interactivity in a Decision Aid: Findings From a Decision Aid to Technologically Enhance Shared Decision Making RCT. American Journal of Preventive Medicine. July 2019;57(1):77-86. DOI: 10.1016/j.amepre.2019.03.004.
- Jimbo M, Sen A, Plegue M, Hawley S, Kelly-Blake K, Rapai M, Zhang M, Zhang Y, Ruffin IV M. Correlates of patient intent and preference on colorectal cancer screening. American Journal of Preventive Medicine. April 2017;52(4):443-450. DOI: 10.1016/j.amepre.2016.11.026.
- Shultz CG, Jimbo M. Decision aid use in primary care: an overview and theory-based framework. Family Medicine. October 2015;47(9):679-692. PMID: 26473560.
- Jimbo M, Kelly-Blake K, Sen A, Hawley S, Ruffin IV M. Decision Aid to Technologically Enhance Shared Decision Making (DATES): study protocol for a randomized controlled trial. Trials. 2013 14:381. DOI: 10.1186/1745-6215-14-381.
- Jimbo M, Shultz CG, Nease DE, Fetters MD, Power D, Ruffin MT. Perceived barriers and facilitators of using a web-based interactive decision aid for colorectal cancer screening in community practice settings: findings from focus groups with primary care clinicians and medical office staff. Journal of Medical Internet Research. 2013;15(12):e286. DOI: 10.2196/jmir.2914.
- Jimbo M, Rana GK, Hawley S, Holmes-Rovner M, Kelly-Blake K, Nease DE, Jr, Ruffin MT IV. What is lacking in current decision aids on cancer screening? CA: A Cancer Journal for Clinicians. 2013; 63:193-214. PMCID: PMC3644368. NIHMSID: NIHMS438825. DOI: 10.3322/caac.21180.
Liz McDaniel: Hello and welcome to another episode of No Easy Answers in Bioethics, the podcast from the Center for Ethics and Humanities in the Life Sciences at the Michigan State University College of Human Medicine. This episode features guests Dr. Karen Kelly-Blake, Associate Professor here in the Center, and Dr. Masahito Jimbo, Professor in the Department of Family Medicine at University of Michigan Medical School. Drs. Kelly-Blake and Jimbo discuss their NIH-funded study known as DATES, which addressed shared decision-making, decision aids, and patient-physician communication regarding colorectal cancer screening. The two researchers provide insight into the study and its results, also reflecting on what the process of shared decision-making means to them in the present day.
Karen Kelly-Blake: So hello, I am Dr. Karen Kelly Blake, Associate Professor in the Center for Ethics and the Department of Medicine here in the College of Human Medicine.
Masahito Jimbo: Hello I'm Dr. Masahito or "Mas" Jimbo. I'm a professor of family medicine and urology at University of Michigan. I'm also the chief of the university family medicine inpatient service, and director of faculty development for the department.
KKB: Well welcome Mas, and thank you so much for joining me today. We are going to discuss our research collaboration. You and I have been working together for a number of years in the area of shared decision-making.
KKB: And most recently, we have completed a project that goes by the acronym of DATES. If you would, tell our audience what DATES is, and sort of how you came about thinking about that and the rationale for the project.
MJ: Sure. So just a, briefly about my background, I'm bicultural, I'm bilingual, I'm originally from Japan but grew up in the United States. So communication, how to effectively communicate has always been an interest of mine. And since I became a family physician, you know, that interest gravitated toward patient-physician communication. And what can we do to improve that, because I do feel that improving the communication between the patients and their providers or clinicians would lead to not just better agreement between the patient and their physician, but also, you know, better health outcomes through better adherence to whatever testing or other treatment that's recommended by the physician. So my project the DATES or it's called, Decision Aid to Technologically Enhance Shared Decision Making. This came up from my, from these interests. One was regarding patient-physician communication. And the other was I was, I was always interested in cancer screening. And it kind of came about because it kind of became a nice interface between communication and health outcomes. Because when I was doing some research into Japanese healthcare when I was doing my Master of Public Health training at University of North Carolina Chapel Hill, I noted that the, although Japan has one of the highest health, you know, one of the best health outcomes in the world in terms of longevity and neonatal death rates and whatnot, and having a universal health insurance and very low illiteracy, and very developed public health infrastructure, their cancer screening, for example, cervical cancer, breast cancer, colorectal cancer, and in case of Japan, stomach cancer, screening rates were very low, like in the 20 to 30 percent.
MJ: United States with, you know, despite all the problems we have, you know, the cervical cancer screening rate is now about 80 percent, breast cancer is 70 percent, and colorectal cancer is also above 60 percent approaching 70 percent. So I really started to wonder why is this discrepancy despite all the infrastructure and the, you know, that's available. And that's how I got really interested in how does not just a culture but most effectiveness of communication relate to these changes. And then once I started to think about what I could do to contribute to this research, I turned towards colorectal cancer screening because it is the cancer screening that is universally recommended to men and women.
MJ: Of average risk at ages, you know, 50 years and over, and if you have higher risk such as positive family history you start even earlier. And it was, in the United States, and other countries also, but compared to, for example, breast and cervical cancer screening, it still suffered from lower screen rates. And then I was looking into, so, what could be an effective way that to, to help patients and physician communicate about the screening issue, and then, you know, lead to better decision-making and satisfaction. And, obviously better screening adherence.
MJ: And colorectal cancer, not only was it universally recommend screening test for a, you know, for a common cancer, it was also unique in that for average risk patients it had more than one screening test that is felt to be equally viable. You know, and typically it will be a stool blood test once, once a year. Or endoscopic screening. You know, and most commonly colonoscopy every 10 years. Although there are other modalities like flexible sigmoidoscopy, and barium enema or CT colonography, those modalities are used much less commonly. So it's usually stool blood test or colonoscopy. But the important issue here is there are more than one test option available, let's say as opposed to breast cancer screening which is mammogram.
MJ: And cervical cancer screening, which is a little bit more complicated these days, but, you know, it was pretty much like a Pap smear. And now you know HPV testing as well. But, so I focused on the colorectal cancer screening and I wanted to see, so, with the, not just whether the decision to be screened or not, but then the decision to which test you choose if you are average risk. Of course if you're at increased risk you have to do colonoscopy. What effective communication would occur between the physician and the patient to, you know, maximize the patient understanding, clarify the patient's choice regarding which test that they would like to take, and ultimately lead to they're actually undergoing the screening test, whichever the one that they chose. And, you know, another thing that I know from being a family physician is that we, we have multiple things to deal with in a visit. You know, for example in this, you know, study that I'm going about to explain a little bit more, we did find out from over 500 transcripts of the patient-physician visits that, you know, physicians and patients may address anywhere from as few as 3 to maybe more than 20 issues.
MJ: Over their visit. So it's, you know, it's very difficult for physicians to explain everything about, you know, colorectal cancer screening, even though it is an important screening, in a course of a visit which can be typically limited to 15 to 20 minutes. And also we know that the physicians, we physicians aren't necessarily that skilled regarding this concept of shared decision-making where, you know, physicians, we bring our own experience, values, and expertise, and the patients bring their own experience and values. And we discuss these issues together to come out with an option that best matches the patient's preference and values. And this is shared decision-making, it's felt to be an important way to communicate when there's more than one option available in either a test or treatment. So, I focused on that, and I also focused on a tool called decision aid. Which can be web based, which can be paper, which can be interactive or not, and decision aid is basically a tool to help patients understand better what the choices are, what the pros and cons are. And help them, you know, increase their knowledge about them but also clarify their preference about the particular option that they need to choose from.
So in my trial, which was funded by the National Cancer Institute, and which Karen, you were a co-investigator, we did a comparative effectiveness trial. Basically, I think from the prior studies we did feel that the decision aid has already shown some evidence in increasing the colorectal cancer screening rate. What I wanted to see was, can a decision aid that's interactive, in that it's tailored towards patient's risk and the patient's preference, so it's kind of a more super-duper type of decision aid. Can that bring about a better outcome compared to more of a standard decision aid. Where, you know, it has everything in place similar to the interactive one, but the patient doesn't really, can't go through an interactive tool to determine whether they are at increased risk of colorectal cancer screening, or to determine what kind of values they have that which gravitate toward one test or the other. Namely stool blood test or colonoscopy. So we did this trial in southeast Michigan. We worked with three university primary care practices, and 12 private primary care practices. You know, ranging in size from solo practices to group practice. Total over 50 physicians involved in the study. And then we basically had these patients who were already established with each practice randomized into this interactive decision aid, or to this otherwise, non-interactive but otherwise comparable decision aid. And we had about 300 patients per each arm, to then, you know, look at multiple time points to collect data. Just before they are randomized, right after they undergo through the decision aid. Then this, by the way this decision aid was administered right before the patients--
MJ: --Actually came to the physician's office for their routine visit. Either a checkup or a chronic care visit.
KKB: And Mas, if I could stop you right there.
KKB: We should also let people know, at that point where they engaged with the decision aid, they were also given a summary of what they chose after going through that decision aid, and that was to be a prompt for the physician and the patient to have a discussion about that screening decision once they entered the clinical visit room.
MJ: Right. Good point, because we, although this decision aid was targeting the patients by using this, this tailored summary sheet which actually summarized the patient's risk and the preference and what the patients ultimately chose. The physicians could be prompted or activated for a meaningful shared decision-making discussion as well. Yes, thank you for reminding me. And, you know, after they underwent the decision aid, they underwent another survey, then they saw their physician, which visit was completely audio recorded, consented of course. And then after the visit the patient received another survey. And that was it for the patients for that day. And then 6 months after the visit we reviewed, audited the chart to see whether they had undergone colorectal cancer screening and whether that testing matched the patient's preferred choice at the time of the visit. So that was the gist of the study.
KKB: Mm-hmm. And so, you and I labored through over 500 transcripts. [Laughs]
MJ: Yes we did.
KKB: To measure shared decision-making. And lo and behold Mas, what did we find?
MJ: Yeah, so, you know...
MJ: Yes, you know, first of all the target was 600 patients, I think we hit the target of 585 and we thought that was fine.
KKB: Yeah. [Laughs]
MJ: The study was actually powered to, you know, detect the difference at about 450. And then, you know, of course not all transcripts were, you know, readable or useful.
MJ: But we were able to get about 550 transcripts. But, what we did notice was that, well number one, it didn't matter whether the decision aid was tailored or not. You know, whether the decision was tailored or standard, it basically led to the same rate of colorectal cancer screening in the one year about, 6 months about 40 percent. We were, although we didn't have a usual care group, we were fortunate enough to have a group that we call quasi-usual care. These were patients matched demographically but didn't participate in the study. And we were able to obtain that for the 3 university practices because I was an employee and I was able to obtain the data through the IRB. And that care group without any decision aid it was 18 percent. So we know that the decision aid did have an impact. But, again, if the decision aid was done, done in an easy, you know, done in an easy to weigh method. It didn't have to be interactive. It didn't have to really help the, you know, help to tailor the patient's risk or the preference. The patients were able to kind of figure out, that out on their own I think. And it would come out with similar knowledge, similar positive attitude toward colorectal cancer screening, similar preference or clarification preference regarding which test they want to use, and ultimately similar screening rates for colorectal cancer. And we also noticed that there is really no difference in shared decision-making.
MJ: Between either decision aid.
MJ: And also, we looked further into, you know, whether the shared decision-making impacted the, you know, their intent to get screened or further clarified preference regarding a test option, or whether it actually lead to higher colorectal cancer screening rate. And so we basically pulled the both arms and we just simply looked at the correlation between these end points and the degree of shared decision-making that occurred during the visit as measured by this tool called Option 12. Which, a developer was a consult--
MJ: Dr. Elwyn was a consultant to our team. And this Option 12 is probably the most widely used and validated tool to measure shared decision-making. Although one limitation of this tool is that it looks strictly at the physician performance of shared decision-making, and not that of the patient. But we looked at all those correlations and we really didn't see anything. You know, so, well, we did notice that for example there is racial difference between, in terms of shared decision-making. I think we did see that for, you know, African-Americans compared to Caucasians, the shared decision-making was lower.
KKB: Yes. Which we've seen before in the literature where they've shown--
KKB: --That's sort of a standard thing.
KKB: That the communication that occurs between black patients and their doctors is at lower rates. And I think lesser quality than what happens between white patients and their physicians.
MJ: Right. Which was actually very interesting, because one unique piece from our study, from the baseline survey that we obtained, was that the blacks actually had higher intent, and higher self-efficacy. That is, a thought that they are actually able to do it, those, they scored higher in those attributes, at baseline compared to whites.
MJ: But, so they were actually better informed, better engaged at the baseline, than the white patients. And everything else was pretty much equal demographically. And then, you know, this, the shared decision-making by their doctors, it was scored lower during the visit. And, and also, when we are actually look at the colorectal cancer screening rates between the two racial groups, blacks and whites, blacks did undergo screening at a lower rate than whites. So...
KKB: And, yeah, it's hard for us I think to be able to expand on why that might be for our particular study. But we do know in the literature oftentimes they do talk about different social determinants--
MJ: That's right.
KKB: That [inaudible] those lower screening rates—
MJ: That’s right, that’s right. Yes.
KKB: --And those sort of lower adherence rates to whatever screening may have been recommend.
MJ: That, that's correct, because although the shared decision-making was lower, interestingly the blacks still had about equal or if not higher intent to undergo colorectal cancer screening at the end of the visit, compared to whites.
MJ: So they were still motivated. But something happened between the visit and the actual screening, because they were not able to do it at as high of a rate as the whites. And this is probably has to do with access and other social economic factors that our study didn't address.
MJ: But more importantly I think our study was important negative study in that, you know, the shared decision-making didn't really have that much of a contribution to the other aspects of, you know, intent, or preference clarification, or the actual behavior, colorectal cancer screening. Because, you know, there's an assumption I think going on particularly with policymakers of that, who expound shared decision-making, that, that it is good, that it does lead to better health outcome, and it does lead to better health. Which, but when you look carefully at the literature, and one of my previous co-investigators, Jennifer Elston Lafata and her group, had a very nice review about that. About 4 or 5 years ago. That shared decision-making doesn't necessarily lead to better behavior, or even possibly better social cognitive changes.
KKB: Yes. So--
MJ: We do know that—yes?
KKB: Oh I'm sorry go on, I didn't mean to cut you off.
MJ: We know that shared decision-making and also decision aid which is supposed to help with shared decision-making, you know, do lead to increased knowledge and maybe satisfaction about the decision. But other than those subjective factors, when you look at more the objective outcomes, you know, there's not as much positive impact as we thought that we were going to see.
KKB: Yes. So, for those of us who are engaged in shared decision-making, we are engaged in patient/physician communication and how we can improve that, and understand that those are key significant skills. And also understanding that really at its base shared decision-making is an ideal. And it is an ethical ideal, I think.
KKB: Because it is important for those discussions to take place. But then, at its base as well, what we're trying to think about is how do we know that a decision, one, is truly shared, and how are we measuring, and what are we measuring when we say we're measuring shared decision-making.
KKB: Within many instances the tools that we're using are not factoring in a relationship dynamic. We're not looking at length of, the length of time a patient and physician have been engaged in a dyadic relationship. We're not looking at the quality of that relationship. How then are we talking about shared decision-making, if we're not also considering the relational component of shared decision-making?
MJ: That's very true because shared decision-making, most of the measurement tools are transactional. They only look at the particular certain behaviors during that particular time that it was measured. You know, for example, were the, were the patients told that there were options available. You know, what they told which options were available. You know, what, what is the pros and cons of each option, and yadda yadda. Now, the issue there is that, yeah, we measured the shared decision-making, quote unquote, for that particular visit. But we didn't really measure anything from what happened before that. We don't know what kind of conversation has been going on prior to that. You know, maybe there has been some discussion ongoing already, and, and so by the time that the, even without the decision aid, or maybe, you know, help with some decision aid, that the, if the patient had firmed up their preference or decision about the, in our case, colorectal cancer screening, the physician already kind of intuitively knew, okay, that from their previous discussion, that that's what the patient wants. And, you know, there doesn't need to be much conversation regarding shared decision-making at that time. The physician can say, okay, you, you have your decision, you made your decision, that's fine, that's okay, I support that. Let's go ahead and get that done. Because we, the measurement is very, is very transactional. We only look at the quantity of what's been discussed, and then the actual, the quality of, even though not many things like options or pros and cons were, you know, rehashed again at the time of the visit. The quality of the actual agreement between the physician and patient may be higher, and that's something that we may miss with our current measurement tools.
KKB: So, for something like colorectal cancer screening where there are several options, and historically we have talked about shared decision-making as being ideal, being ideally situated for decisions that are preference-sensitive.
KKB: And I think colorectal cancer screening would be one of those preference-sensitive decisions. Because you're really making the decision between a stool blood test or colonoscopy.
KKB: And colonoscopy is really considered the gold standard. And particularly for patients who are at higher risk. But I think, and correct me if I'm wrong about this. if I'm misremembering this. In DATES, in, while we were going through the transcripts we found that physicians oftentimes would recommend colonoscopy even for those patients who were average risk because for them, it was the gold standard.
KKB: And they felt that this was the way to know for sure, to know definitively, so why even consider a stool blood test when you can go straight to what's going to give you that definitive answer.
MJ: Yes. Well, for many physicians shared decision-making is actually not necessarily what the word entails, but actually persuasion. [Laughs] So, not to really come to an agreement where both may agree, but for the patient to agree to what the physician recommends.
MJ: So, so, and there is something studies to back that up. I mean one is regarding, you know, the physician. There have been other studies that show that even though average risk patients should benefit equally from colonoscopy or stool blood test, physicians invariably recommended colonoscopy.
MJ: We also know that for the US Preventive Services Task Force they have various tests or other things that are recommended like A through, A through D. And A and B are the ones that are either strongly recommended or recommended to undergo.
MJ: And C is actually kind of equivocal, it can go either way by may consider. I is indeterminant where, you know, there's really no data. And D is like, don't do it. And so when you think about it, those recommendations C and I are the ones where the shared decision-making should impact the most. Because we don't know, have much data.
MJ: But the physicians actually feel that those recommended A and B are the ones that where they should discuss in terms of quote unquote shared decision-making. Which, when you think about it, doesn't really make sense because A and B are already strongly recommend.
MJ: So, you know, so again, I think it comes to the physician's perception of shared decision-making as more of a persuasion rather than, than true shared decision-making. And another piece, you know, what we found in our transcripts is that, for example, you know, the doctor might be talking about colorectal cancer screening with the patient, but then the topic will move to hypertension. You know, the management, patient doesn't really like their medication currently, and then the doctor starts talking about other medications available. So that's also discussing options as shared decision-making. And maybe the patient may complain of pain where they kind of talk about options like, you know, Tylenol, or non-steroidal stuff like Advil, or even maybe opioid. And again, discussing options. And then if the patient has depression they might talk about, you know, treatment by therapy, or treatment by medication. If medication, what medication. So there's really lots of different topics that entail options, and therefore shared decision-making. And so when, again, we found in our transcripts that there can be anywhere from 3 to like over 20 different topics that have been discussed. And if you're gonna try to do shared decision-making for all of them, you can't really do it. And what are the really important topics to, where--
MJ: --Shared decision-making can be really important. You know, for example, patients with early prostate cancer where not doing anything treatment-wise, but following closely through active surveillance, or radiation, or actual surgery. I mean so those are the options that, you know, should be discussed in a shared decision-making manner. And where the patient would likely be very engaged because, you know, well, they have cancer.
MJ: That, like a same degree of importance. For example, even like with colorectal cancer screening, I'm always, you know, kind of chide our profession when I know that the physicians always recommend colonoscopy. But, you know, if the, if, and some patients are fine with it. You know, they're not given the option, they just go ahead and do it. If they do it, is that, you know, I mean, was it bad that they weren't offered the stool blood test. You know, but if there wasn't the time to discuss that, you know, and if there were other issues like selecting an appropriate blood pressure medication, that may be more important in terms of shared decision-making. Can we position. I mean those are things that we need to think about. You know, when is, should the shared decision-making, when is it really important.
KKB: Yeah. And in some ways, you know, we've been doing this for a long time, Mas.
KKB: And one of the things that I struggle with is, what is shared decision-making? Because it goes back to what you were saying about it being transactional, it being about persuasion.
KKB: My question is always, if we're talking about shared decision-making, how do we know that a decision is actually shared? At what point in a conversation with the patient do we know that has occurred? And I guess I want to kind of go back a little bit, and let people know that in DATES, although we sort of primed the patient by exposing them to the interactive decision aid, we didn't do any type of prime for the physician.
KKB: So the physicians were just really acting as they normally do--
KKB: --Without any training, or any kind of education, or any kind of skill-building around shared decision-making. And so it's, would be unfair for us to say, well we didn't find any shared decision-making in the transcripts. Which we didn't, for the most part, without also saying that we didn't necessarily prime the physicians to let them know that this is something they should be actively engaging in. And you and I have talked about this.
KKB: Maybe at nauseum about the fact that--
MJ: [Laughs] Yes.
KKB: --You can't really just prime one part of the dyad.
KKB: You have a look at the dyad as a whole.
MJ: Right, yes. Yes, right, I mean the physicians were given kind of like a summary sheet. but that's all.
MJ: Otherwise nothing. And also it's important to note that, yes, you know, the overall score of the physicians regarding shared decision-making was, you know, quite poor.
MJ: Of out of 100 possible points, you know, the average was around 10 to 12. You know, which is obviously very low. But interestingly, when you look at other data regarding the use of Option 12, you know, it's, the typical score is between 10 and maybe 25 at the most. And there was a very interesting study that looked at shared decision-making in lung cancer screening. Where there's now a policy that the shared decision-making has to occur with lung cancer screening.
MJ: But the authors of this study actually reviewed the transcripts, and they scored the shared decision-making based on the same tool, Option 12, and the average score was 6. Out of 100.
MJ: So, actually our physicians did better than-- [Laughs]
KKB: Yeah. Wow.
MJ: --The physicians in that study. So, when you think about that, you know, we, maybe the shared decision-making that was done was so low that, you know, that a little bit of improvement from really really low to maybe just a little bit low. [Laughs]
MJ: Like improvement in two points out of a possible 100, maybe the effect size was too small to have a meaningful difference. You know, if the, you know, if the shared decision-making occur, let's say it went from like 20 out of a 100 to let's say 50, maybe we may have, you know, seen some impact. But again, it's important to note that the measurement tool only looked at the transactional--
MJ: --You know, measures, in that one particular visit only. So, we actually don't know whether that is the right way to measure, you know, the actual decision-making process that occurs between the physician and the patient.
KKB: And sometimes I wonder if, in trying to measure shared decision-making, if somehow we as researchers haven't manifested this sort of shared decision-making ideal that's really unreachable, unattainable, and untenable. This idea that it's got to follow these certain sort of rules, these things have to happen. You know, I'm at the point in my career where I'm just like, I'm just okay with some good enough conversation at this point.
MJ: [Laughs] Yeah.
KKB: If I can get a physician and a patient to have some sort of conversation about what are the options, what are maybe some potential side effects, you know, what are the goals for the patient. I mean if they can just do that for me, I think I'm going to have to be okay with that. Because I can't continue to see shared decision-making as some sort of fantastical unicorn that's going to pop up in the visit room, and magic is going to happen. I just don't think that's going to happen. And I'm pretty much, I think I'm done with that.
MJ: You're right, I mean, I think over the course of the study I kind of transitioned from a shared decision-making true believer to a shared decision-making skeptic.
MJ: Yes. Yeah, that's true. And also, I think the interesting thing about shared decision-making, I think it is kind of Eurocentric.
MJ: Very individualistic, one-on-one. Really kind of discounts the involvement of the family. And also what's interesting is when I speak to some of the research on shared decision-making, I don't see much difference between what they consider as ideal shared decision-making versus informed choice, where the patient does all the choice-making.
MJ: And when we talk about, well, it's actually physician also making some recommendation, right? They said, no, it's like, you know, the patient has to drive all the decisions. Which, I don't think that's necessarily true. And the other piece is, you know, when we look at the patient's preference for decision-making, we know that, yeah, most patients either like to make decisions on their own, or, you know, with consultation with their doctor.
MJ: But we do know that some patients really want to have maybe equal contribution with the doctor, or, you know, after they, you know, discuss they want the doctor to make the decision. Or some small percentage of patients actually want the doctor to make the decision, you know. If that's the preference that they started from, is, and that's what their value is, is forcing them to really, you know, kind of make an active decision, is that for the patient's benefit. That's sometimes something that I kind of struggle with. Especially when I think about how cultural differences may contribute to how much patients may want to be involved in the decision-making process. And this is actually kind of tricky, and it could be a slippery slope in a way, because, you know, we do know that the more informed the patients--
MJ: The more active they want to be involved in the decision-making, So we want to make sure that their, you know, preference for who wants to, who makes the decision, is derived from being they're fully informed about it, but they still want somebody else to make the decision. Versus, they are not fully informed, so thus they don't want to make the decision. I think we need to make that distinction.
KKB: That's right. And we do need to, I think, engage patients. But I think at the very beginning we have to make sure that the people who are involved in making the decision, the physician, the patient, whoever's important to the patient--
KKB: --That they want to bring into the decision-making process.
KKB: There has to be an understanding that first, there's a decision to be made. I think oftentimes people are not even clear about that at the very beginning. We are going to make a decision about what blood pressure medication--
KKB: --Is gonna work best for you.
KKB: Based on the different side effects there are possible, your work schedule--
KKB: --What you are willing to tolerate and what you're not willing--
KKB: --To tolerate. And I think oftentimes you're right, with shared decision-making, in some ways what's happened is that we have given patient autonomy this super duper level of centrality.
KKB: That, the idea that the physician actually has something to add to the discussion, and can be involved in making some recommendations, has gotten lost, some kind of way. And I remember in grad school, in my working on my dissertation, which had to do with benign prostate disease and health care decision-making. I remember writing my dissertation, you know, the idea that someone doesn't want to make a decision, they're like, doc, I need you tell me what to do, and I'm gonna do it. Making that decision is in itself a decision.
KKB: And that's okay. It's almost as if we've forgotten that the decision to not make the decision is a decision that can be acceptable.
MJ: Yes. And, you know, an important part of that is also, it's always the continuum.
MJ: And that's, the relationship and continuity becomes important. Because, you know, a patient may decide to have the doctor make the decision, and then we come to a, you know, treatment decision. And then, you know, if that medication didn't have the desired effect or some side effect or something, then maybe the patient might be more motivated to make, you know, make greater contribution to the decision-making process at the next visit. So, they might say, well, you know, I asked you to make a recommendation, and you recommended this, and I did that. I had some problems with it. Now I want to know more about other options and I want to, you know, be kind of more involved in which one to choose. So, you know, again, depending on the visit, and depending on what happened based on the previous decision--
MJ: --The patient's, you know, kind of desire to contribute to the decision-making might change.
MJ: I think those, and that's where the relationship and continuity becomes important, and I think, and that's what makes shared decision-making and the whole decision-making science fascinating, but difficult to try to measure, and difficult to figure out what is good and what is not so good.
KKB: Absolutely. And I do think that's what's missing. The fact that it is a continuum. It is a process. I think oftentimes people think about shared decision-making as this stand-alone moment in time.
KKB: Discussing this one thing. You know, going back to the example I was trying to make about blood pressure medication. Of course you're gonna make a decision about a particular blood pressure medication at that one point. But we're talking about somebody who's got a chronic disease. So, it's going to happen over a continuum of time, how are you going to manage hypertension for this patient?
KKB: So shared decision-making becomes a process--
KKB: --Over an established relationship over a length of time, and it is not a stand-alone moment.
MJ: That's right.
KKB: So, Mas, I think it's time for us to end this very--
KKB: --Fascinating and wonderful conversation. Of course you and I talk about these things offline all the time anyway, but it's nice--
MJ: And it's always a fascinating discussion, always great to talk with you.
KKB: Yes. All right, well thank you so much Mas.
MJ: Okay, and hopefully this weekend both teams win in football. [Laughs]
KKB: [Laughs] There's always hope, right?
MJ: [Laughs] Yeah.
KKB: [Laughs] Thank you so much.
LM: Thank you for joining us today on No Easy Answers in Bioethics. Please visit us online at bioethics.msu.edu for full episode transcripts and other resources related to this episode. A special thank you to H-Net: Humanities and Social Sciences Online for hosting this series. This episode of No Easy Answers in Bioethics was produced and edited by Liz McDaniel in the Center for Ethics. Music is by Antony Raijekov via Free Music Archive.