“Too often in medicine, health care providers assume what patients want or need. Like the crocodile, we may assume all patients would want a tire removed in order to help extend their life – even if the cure meant losing the only thing that made their unique life worth living. The burden of changing health care should not rest on the shoulders of patients facing major medical decisions, suffering symptoms, worrying about their future, and struggling to advocate for themselves. It is important we help patients recognize just how important their opinions are.”

Resources mentioned in the show:

The Ottawa Hospital Research Institute: A to Z Inventory of Decision Aids

MGH Health Decision Sciences Center

Karen Sepucha is a research scientist.

She shares her story and discusses her KevinMD article, “We must help patients recognize how important their opinions are.”

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Hosted by Kevin Pho, MD, The Podcast by KevinMD shares the stories of the many who intersect with our health care system but are rarely heard from.

Transcript

Kevin Pho: Hi, and welcome to the show, where we share the stories of the many who intersect with our health care system but are rarely heard from. My name is Kevin Pho, founder and editor of KevinMD. Rate and review the show at KevinMD.com/rate. Subscribe at KevinMD.com/follow. Today on the show, we have Karen Sepucha. She is a research scientist, and she wrote the KevinMD article “We must help patients recognize how important their opinions are.” Karen, welcome to the show.

Karen Sepucha: Thank you. Very nice to be here.

Kevin Pho: We’ll get into the article in a little bit, but first off, can you share your story and journey to where you are today?

Karen Sepucha: Sure. As you mentioned, I’m a research scientist. I actually am the director of the Health Decision Sciences Center at Massachusetts General Hospital, and I’m on faculty at Harvard Medical School. My work broadly is focused on trying to improve the quality of medical decisions.

I fell into this area as a PhD student in engineering. I was really drawn to one of the core components of our engineering program, which was decision analysis. While some of my colleagues went off into doing very sophisticated mathematical simulation models, I was really gravitating towards applied work, thinking about how people understand risk, how we cope with uncertainty, and how we communicate and collaborate with others when you can’t make these decisions alone. Those are the things that always got me very excited, and medicine is full of these kinds of situations: difficult, tricky, thorny decisions. So I did a couple of early research projects in medical decision making, and then I just got hooked, and I haven’t looked back since.

Kevin Pho: So tell me, what are some of the obstacles that prevent patients today, in general, from making good medical decisions?

Karen Sepucha: Well, there are certainly many obstacles. I think there’s figuring out how you get good information and where we find information. Sometimes there’s too much information, or information overload. So I think that’s always a challenge, figuring out where the trusted sources of information are.

And then the other challenge, which I think came out in this piece, is really just a lack of recognition of how important patients’ expertise is, and what they bring to this. I think some people think that medicine, as a science, has all the answers. We just need to find that right expert, and they will tell us all the answers. But really, a lot of medicine is about understanding and tailoring things to who this person is, what they care about, and what matters most to them. So understanding and helping patients feel comfortable talking about what’s important to them, and thinking about how they feel about these different potential outcomes, are really some of the challenges, I think, that make it hard to do these decisions well.

Kevin Pho: So let’s talk about that in your KevinMD article titled “We must help patients recognize how important their opinions are.” Now, for those who didn’t get a chance to read your article, can you just walk my audience through it and share the story of why you decided to write it?

Karen Sepucha: Yeah. So the story of why, I think, comes out of maybe dozens of years of my husband nagging me about taking some of the cases and stories that I kind of would share at dinner and putting them into a more accessible format. In my job, I write a lot of research articles that go into public, peer-reviewed medical journals, and maybe 12 people read them. But in those articles, the goal really is to be very objective. Don’t have an opinion, and let the results speak for themselves.

So this article kind of came about, actually, as a result of a project that I’ve been working on. MGH had started this group, a Public Voices Fellowship, and it’s working with The OpEd Project. They are working to help people think through how you get your voice out and how we get these stories out to different audiences. So I was really excited. This was my first attempt to do that, and it found a home with KevinMD, which I was pretty excited about. So that’s sort of the genesis of where this came from.

For folks who haven’t read it, the article starts with a kind of random but fun example about a crocodile, and really the reason to bring that in is just to illustrate how easy it is that we make assumptions about what others might want or need, and just to kind of take a step back and raise some questions about whether or not we get that right. I think that when we make assumptions and place our values onto others, we have to be very careful about that, because they might feel differently. And I think the parallels to medicine, the patient-physician relationship, and making decisions in medicine are many.

So what we talk about in the article is really focused around a case, actually, a breast cancer patient that I had worked with, and we were talking about how she made the decision to have surgery. So many breast cancer patients are thinking through, do I have a mastectomy? Do I have a lumpectomy? It can be a sort of challenging situation, with a new diagnosis that is scary. We were talking a bit about what was most important to her, what she was most concerned about, and what kinds of things made her life worth living.

After a few minutes of our conversation, she kind of stopped and was like, “Oh my gosh, I did this all wrong.” So I asked her, “What are you talking about? What do you mean, you did it all wrong?” And she said, “You know what? I asked every single doctor I saw what they would do if it was their wife, what they would do if it was their mother.” And she’s like, “But their answers now are kind of meaningless, because I didn’t know what their values were. I didn’t know what made their life worth living, what their wife was like.” So that information and that recommendation were kind of meaningless without that information. And then she said, “You know what? Nobody ever asked me this when I was going through this decision process.”

So that really just stuck with me, that we’re missing this really important, knowable information that would have such a big impact on decisions. How do we get that into the conversation? And it’s not just that the doctors aren’t asking. It’s that the patients have no idea they should even be thinking about it. So it’s sort of on both sides. There’s just this gap in understanding how important it is to think about where the patients are, what they want, and what they need.

Kevin Pho: Just to get an understanding in terms of the scope of the issue, do you have any data in terms of how often, or not, patients’ values or experiences or stories are typically included in the decision-making process?

Karen Sepucha: Yeah, there are some growing data on that. It was a bit of a while ago, but there have been two national studies that have looked at the quality of the decision-making process. These are studies that looked at common decisions. They looked at cancer screening decisions for breast, prostate, and colorectal cancer screening; common medication decisions for depression, cholesterol, and blood pressure; and then surgical decisions, thinking about hip and knee replacement, or spine surgery, or cataract surgery.

What was neat about these studies is they actually asked the same type of questions of the patients, getting at whether there was shared decision making. So they asked, did the doctor talk about options? How much did they talk about the reasons to have this test or treatment? How much did they talk about the reasons not to have this test or treatment? And then they asked two other questions. One was, did the doctor make a recommendation? And did the doctor ask you what you wanted to do? What they found pretty consistently across these studies and in these clinical areas was that doctors were twice as likely to make a recommendation as they were to ask patients what they wanted. So there’s a big gap in terms of whether or not patients are even being asked about this stuff.

Kevin Pho: And when you talk to clinicians and you talk about some of your findings about including patients’ values, or including patients in a decision-making process in general, what kind of response do you get?

Karen Sepucha: So it ranges. I think, for the most part, they’re trying to do it already, so I do think that they really are trying to figure out, how do I do this? And then I think the second response is, “Gosh, I have no time to do this. There’s hardly enough time to even give out the information that I think is important. We have to talk about the options, we have to talk about the outcomes of these treatments, and how do I find time?” It seems like the values are this third piece that gets left behind, because they don’t always know how to do that well, and they don’t necessarily want to open the can of worms and dive in there. So I think there are certainly some challenges that we hear.

And then the other thing we hear is that they try: “So I tried to do that. I tried to do shared decision making. I asked the patient what they wanted, and they looked at me with this blank stare and said, ‘I have no idea. You’re the doctor, you tell me.'” So I think the other thing is, when patients aren’t ready to do this, how do we help? I think we find that doctors have years of training and lots of expertise diagnosing diseases, but they’re just not well trained in diagnosing patients’ preferences, and doing that within the constraints of short medical visits, because we’re always going to be there. So that’s something that our group and our research try to help build: those skills and capacity.

Kevin Pho: This is something I deal with daily in an internal medicine primary care clinic. So what are some of the proposed solutions to some of the issues that you just brought up?

Karen Sepucha: Yeah, great question. Part of this is thinking about what we can do to support patients before, during, and after visits when they’re making decisions. We have tools, for example, that are available called decision aids. These are educational tools, and they’re a little different than traditional patient education, which is usually like, “You’re taking this medication. Here’s a piece of information that tells you about this medication.”

Decision aids really set up a decision. So there are multiple options that are covered. They have outcomes, so they talk about the good and bad consequences of these options. And to the extent that there’s good evidence, they will often actually also include risks: What’s the likelihood of getting that benefit, or what’s the likelihood of having that complication? So they’re also really effective in communicating that numerical information, which can be critical to help people understand, “OK, here’s the benefit, but only 10 percent of people might have this risk. So how do I balance that?” And then a third component that’s included in decision aids is something called values clarification. They really do start and help patients think through what’s most important to them, how they feel about these good and bad potential outcomes, and how they might use that to help them figure out which choice might be best for them.

So one thing that I think has been really critical and helpful, and there are lots of studies about these kinds of tools, randomized trials using these decision aids that show that they really do help, is figuring out how we help get that information to patients so that when they come to the visit, maybe we don’t have to talk about all the information, and we can really just talk about: What does this mean for you? How is your situation? Maybe the decision aid had some generic information. How is your situation a little different, and how can we really tailor everything for you?

So what we hear from the physicians who use decision aids is that that’s a really big benefit. It doesn’t shorten the time in the visit. It just changes what you’re talking about, so that it’s much more meaningful, and you’re really getting at a much more nuanced conversation with the patient, and they’re much more prepared to have that good conversation with you.

Kevin Pho: So can you take us into the exam room, a hypothetical case study where a patient would successfully use one of those decision aids, and how the physician would use that decision aid in that visit? Any case studies that can really illustrate that point?

Karen Sepucha: Sure. We’ve been doing a lot of work lately with some of our orthopedic colleagues. I think a lot of folks are a little bit nervous sometimes going to see a surgeon. It’s often the first time they’ll be meeting the surgeon, so they don’t have a long relationship to build on. So we’ve worked to help get patients decision aids before an appointment with an orthopedic surgeon.

Then, when they go in to meet with the surgeon, for example, one of our surgeons says she usually just asks, did they have a chance to review it? Do they have some questions about it? The decision aid talks about surgical and non-surgical approaches to, for example, knee osteoarthritis, or someone with hip osteoarthritis, so thinking about whether or not to have a joint replacement. So she’ll usually start by asking them, any questions or concerns? What are they thinking about? Are they leaning towards one of these options or another? If they’re leaning towards non-surgical options, then she’s going to have a much different conversation than if someone comes in and says, “Yeah, I saw that. I really want to learn more about surgery.” Typically, without the decision aid, she would have just talked about surgery. That would have been the normal spiel. So she really has used it to change the trajectory of the conversation and really base it on what the patient is interested in.

Kevin Pho: We’re talking to Karen Sepucha. She is a research scientist, and she wrote the KevinMD article “We must help patients recognize how important their opinions are.” Karen, for those clinicians who may not have the benefit of the decision aids that you’re talking about, what kind of questions could we be asking patients in the exam room that really can help elicit their preferences, values, and opinions?

Karen Sepucha: So that’s great. One of the, I think, maybe big lessons, when we start talking about how you put this into practice, is, I guess, starting with an invitation, not a recommendation. A lot of times when we go and observe clinical visits, what we hear is doctors leading with their recommendation and then taking the time to kind of explain: Well, why did they make that recommendation, and what does it mean? So, for example, the surgeon that we were just talking about might come in and say, “Looked at your X-rays. Got really severe osteoarthritis. I think surgery is going to be a great option for you,” and then talk about it. Maybe on the primary care side, I watched: “Looked at your labs. Your blood test came back. Your cholesterol is pretty high. I think we need to start you on a statin.”

I think doctors often assume that patients will just speak up and let them know if that doesn’t make sense or if it doesn’t fit for them. But the other thing we find often is that studies show that patients will not contradict or disagree with the doctor’s recommendations. So if you start with the recommendation and then explain it, then you’ve pretty much shut down the conversation. So we try to have people flip it and start with an invitation for a discussion about a decision, and start with the questions: What matters most to you? What are you most concerned about? Those are the two things you could ask. We’d start there, and then you can kind of build out around that in terms of, “OK, so what would that mean for the kinds of options that we think are really going to make sense for you? What are the outcomes that I want to make sure that we cover?” And then you kind of end with a recommendation.

I think the other thing that we hear from physicians who are trying to do shared decision making is, “Oh, then I just left it up to the patient. So I told the patient to go home and call me when they figured out the decision.” And that’s not really the point either, because the shared part is that, I think, they do want your advice. They do want your expertise. They do want help integrating all of this. But what we want to do is have that recommendation, and the rationale for it, shared with the patient, and reflecting that “I’ve listened and heard what you’ve said, and here’s why I think this path, or this option, might make sense to you.”

Kevin Pho: One thing I found is that the majority of patients certainly do want to speak up, share their values, and have a say in the shared decision-making process. Do you find that there’s a subset of patients, like you said before, “You’re the doctor, I’ll do whatever you say”? Do you feel there’s a subset of patients who belong in that group, or do you feel like all patients want to be involved in a shared decision-making process, and those subsets just need more time in terms of making their voices heard?

Karen Sepucha: So I think the studies do suggest that most people want to be involved, but what that means really differs. I think what we want to be careful about is not placing the burden of decision making on top of people who already have a burden of potentially being in pain, or being scared with a new diagnosis. So I think that shared part is very important, that this isn’t about you telling me what to do, what you want to do, and that can be a very daunting question. “What do you want to do?” “Well, I have no idea, because I don’t understand the information. Could you help me understand that information? Could you maybe even target some questions that would help you figure out how to make that decision and where I might fall?”

So I think there’s a lot of evidence that patients want to know what their options are, they want to know what to expect, and they want the doctor to take into account their goals and preferences. But they don’t always want to make that decision. They want the doctor to kind of tailor it to them.

Kevin Pho: So you mentioned a few resources. Where can people find these resources?

Karen Sepucha: Yeah, great question. Up in Ottawa, they have a decision aid library, so a library of decision aids that are available for lots of different tools and things, that are freely available. Our website has some decision aids that are available freely on it, as well as some links to training programs for folks who might be interested in getting more specific training, as well as some videos. As part of trainings, we have done videos of what it is, what it looks like when you’re doing shared decision making. So we have those available on our website, and I’d be happy to get you the links.

Kevin Pho: For sure, I’ll share those in the show notes. And my final question: What are some of your take-home messages that you want to leave with the KevinMD audience?

Karen Sepucha: Oh, I’d say great question. So probably the take-home message here, when I think about the core message of the piece, there’s this cartoon on my mom’s fridge that I think kind of sums it up pretty well. It’s a picture of these kids who are playing on a playground, and just about all of the kids are in T-shirts and shorts, and then there’s this one kid who’s in a hat, a winter jacket, and a scarf. The caption sort of reads, these friends are asking why this kid’s dressed this way, and he says, “My grandmother was cold.” So I think we’re all kind of familiar with sort of well-intentioned people who have completely different views than we do. So the take-home message, I think, for the listeners is to treat others as they want to be treated, recognizing that that might be very different than what we would want or choose for ourselves.

Kevin Pho: Karen, thank you so much for sharing your time and insight, and thanks again for being on the show.

Karen Sepucha: Yeah, thank you so much for having me.