Good afternoon. I'm Joan Michaels, the director of the STS-ACC TBT registry, and it is my great pleasure to introduce you to Roseanne Palmer, who is a master's prepared nurse and also the manager of the Structural Heart Program at Dartmouth-Hitchcock Medical Center in Lebanon, New Hampshire. Roseanne is going to tell us a little bit about shared decision-making today and perhaps what are some of the differences between shared decision-making and informed consent, as well as some other tips on how to implement this at your institution. Roseanne has been a friend of the TBT registry since the beginning, lectures around the country on shared decision-making as well as other TAVR-specific quality improvement programs, and so we're very lucky and happy to have her speak to us today about shared decision-making. Thank you, Roseanne. Joan, thank you so much. I can't tell you how thrilled I am to be here and part of the Quality Summit this year, and I want to personally thank you for all of the work that you've done in this arena. I know introducing something new and innovative during times of COVID can be challenging, and I applaud you for bringing this topic again to the forefront because it's incredibly important. So I want to start out by talking a little bit about shared decision-making, giving you a little bit of a history around that, and then eventually getting to what I know you all are really interested in hearing about is how to get this done so that our programs, we can highlight our programs in the excellent way that we all want to do. So first and foremost, just to kind of be clear about why we're here talking about this, this is not really a registry requirement. The registry, as always, the purpose of the registry is really to highlight the quality components of the care that we provide for the patients. The reason that we're here talking about shared decision-making today is because our professional societies and our regulatory agencies and best practice will have us understand through research that this is really an essential component of the care that we provide for patients. So as you probably know, in 2020, the ACC AHA guidelines wrote in a shared decision-making as a class one indication, and it has been in a lot of literature, a lot of research throughout the course of the time that we have been addressing change in practice with structural heart patients. And of course, it was not necessarily written into the NCD, which causes a little bit of confusion and we'll hope to clear that up today. But I really want to just back up for a minute and talk about why shared decision-making is so important and what it is exactly. So very simply stated, shared decision-making is really the coming together of clinical evidence and patient goals. It's just as simple as that. And Joan knows I say this pretty regularly, that if I had my magic wand, I would say that the real quality indicator that we should all be looking at is how well did we reach those goals at the end of the day when we can go back and talk to our patients and say, did we reach the goals that we agreed upon before we started? And if the answer to that is yes, then we've all done a great job. So primarily what we're trying to do is make sure that both patients and physicians are contributing to the conversations. So as clinicians, we're bringing in our clinical expertise. So we want to not be offering things that don't make sense for a patient. We're not certainly going to be offering things if it's not feasible for them, if they are at a point in their life where they're way too frail and intervention is no longer a feasible option. We're certainly not talking about that. And we're not talking about options that are not appropriate for that particular patient. But what we are saying is that all available options are discussed at the table with the patient and then the patient contributes their worldview so that we can together come together with a treatment path for the patient. Research has shown us that this is the most efficient way to provide care for patients. It improves the level of knowledge and expertise that the patient has around their disease entity and their treatment choices. It makes the treatment pattern much easier to follow because everyone is all on the same board and the outcomes generally are better when everyone is in agreement with the treatment plan, whether that treatment is palliation or surgery or a transcatheter approach to care. As long as we're all in agreement to the path, then generally speaking, the outcomes are much better. So as leaders in this realm, our role really is to take a really deep and hard look at the conversations that we have with patients every single day, every opportunity that we have, not only when we're talking just about their treatment options, but every interaction we have with patients should be within our antennas focused towards a shared decision model of care. And I'm going to talk a little bit about my own experiences, and we'll talk also a bit about the differences between informed consent and shared decision making. But just to kind of give you a flavor of how I got to this point in time and talking about shared decision making, you know, my career started as a bedside nurse in critical care. And in that role, I also developed a palliative care program for our patients. So we were seeing both ends of the spectrum for decision making with patients. And I certainly participated in patient advocacy all along the way before we really knew that there was a word called shared decision making or it was being written about in that manner. And then in the last decade, as we marched through our different evolution with valvular heart disease and other structural heart entities, we learned a whole lot more about shared decision making. And I will give you a couple of examples. Everyone that knows me knows I love to put voice to my patients' lived experiences. So I'm going to tell you a little bit about the patient that first brought the notion of patient centered goals into the forefront and made me feel a passion towards talking about this and really assuring that it's happening in every practice and not just ours. So, you know, to begin with, I work at Dartmouth-Hitchcock Medical Center. We were the first hospital in the nation back in the 1990s to open a center for shared decision making. And yet what I learned when I stepped into the role as the structural heart manager is that all of us still had a lot to learn about the techniques and the approaches to how we have conversation with patients. And I still learn every day based on conversations that I have with patients and observing others in their interactions with patients. So just to share with you the historical perspective of that very first patient that made me begin to start researching patient centered goals, I'm going to call him Mr. Snow because, you know, we live in northern New England and it seems super appropriate to name him that. But this gentleman came to us back in the day when really the only options that were available on the commercial end of valvular heart disease care was either medical management. So patients would go home and have their symptoms managed at home while they waited to die and while their quality of life continued to deteriorate. Or the other option available to them was TAVR. They were not eligible for open heart surgery. These were really sick patients and most of them were quite frail. And even so, most of them came to us still wanting to have something done because their quality of life had deteriorated so quickly. And that was certainly true with this gentleman. He presented to us, he was in his 90s and he lived in northern New England, way up north in an area where he lived actually in the same home that he was born in. And he raised his family and they have long since moved away. They lived actually about three hours away from him and his valvular heart disease had gotten to the point where he was really starting to not be able to stay independent in his home. And his two sons would take turns and drive the three hour drive each way a couple times a week to check in on him and to get his firewood so he could heat his home and make sure he had sufficient groceries and he wasn't up on the roof trying to shingle his house and those sorts of things. And when he would come in to us, we met him several times over the course of many months because he would come in to us with heart failure. And every time he came in, he would make statements to the nurses that he just wanted to go home and die. And so, you know, as you can imagine, our team was pretty divergent in their thoughts about care for this patient. Some on the team felt that we should do exactly what he said and get him hooked up for hospice care. And others felt that every time he came in with heart failure, that his only option for being able to perhaps improve his quality of life was to have a TAVR procedure. And so there was a lot of disparate conversation around what to do for the patient. And in the middle of it, he was saying he wanted to go home to die. And so it was my job to go in and talk to him and try to make sense of what he wanted. And the first thing I said to him, you know, we had known each other now for a little while. And I said, you know, help me understand what matters most to you. What is the goal that you want to see at the end of this this care today? And he looked at me without question. He said, you know, I'm a burden to my children the way things are. They have to come up and help care for me. I can't care for myself. They're talking about not letting me live in my home anymore. So if this is the way things have to be, I want to just go home and die. But if you tell me you can fix my valve and I can live independently in my home and not be a burden to my children, then I want to try for that valve. I don't care how risky it is. So I went back and talked with my team about that. And we began to then incorporate patient role of care into our conversations at our heart team table that we met once a week. That conversation changed the course of action for that patient because inevitably we would have ultimately gone towards palliation for this patient and made arrangements to medically manage him, keep his symptoms at bay until he continued to decline and pass at home. But instead, we put in a new valve, a transcatheter valve on this patient, and he went home to live his life in the manner that he wanted to. He lived, he continued to live independently for a long period of time. So I tell you this story as just one example of amongst thousands and thousands of examples that we could share. But it shows that unless we actually understood what mattered most to this patient, his course would have been very different than it than it did turn out to be during that time. Now, if you fast forward to the current practice, we're not we're no longer deciding just between palliation and TAVR or just between TAVR and surgical open heart aortic valve repair. There are a multitude of other decisions now that are incredibly complex. As much as we thought they were complex back then, they're certainly far more complex now than they ever were before. When we introduced the low risk patient population, there were things like life planning that we had to think about what will happen if you move forward 20 years from now? What will what will be the course for that patient if we make this decision today? Will it change their options they'll have available to them in 10 or 20 years from now? So those are the kinds of conversations that we need to incorporate into our treatment decision choices when we're having conversations about what options are available to patients. So I'll give you one more example before we talk about informed consent and shared decision making. But, you know, we were onboarding a new nurse onto our team and one of us, we're both about the same age. We have the same educational background, great physical condition, all of those things. And we started talking one day when we were onboarding this particular nurse and talking about, you know, the different criteria around how do you help determine a treatment path for patients? And one of the things that he said is, you know, if all things being equal at my age with no health, other health comorbidities, I would choose to have open heart surgery. And he gave me all his reasons why. And so to prove my point, I said to him, well, I'm basically the same age as you and have similar background in health care. And I would choose TAVR. And I gave him all of the reasons why. And I ended that conversation by saying age isn't a determinant. So you can see that we have very similar backgrounds in terms of our medical comorbidities. And yet we both had a very different view of how we would want this treatment option to progress. So when we're talking to patients, we always have to remember that it's not about what we would want for ourselves or for our family. It's about what they want for themselves and their loved ones. It's their health care journey. It's not ours. So, again, our obligation as leaders in the field is to ensure that those conversations happen every single time. And most of us think that we do a pretty good job. But research shows us that that's not exactly true. And as I mentioned, even having worked in a place that had the first center for shared decision making, we also still had a lot to learn and we still do as we move forward. So today's conversation, really the rest of it will be focused around how do we make all of that happen? So for most of us, we think that what we're actually doing, when we think that we're having shared decision conversations, is really more about informed consent. So I tried to break that down for you a little bit. When we think about informed consent, I like to think that we're really talking about the legal aspect of care, quite honestly. So when we talk about the evaluation with patients, when we're thinking about informed consent, what we're really doing is getting the history and physical around the patient. And then we make a treatment decision. And that's generally provider recommended. So the physician says, excuse me, based on all that we know about you, this is what we recommend. And then the decision becomes the patient basically a take or leave it kind of thing. They decide whether that recommendation that the provider is offering to them is something that they want to reasonably consider. And then the risk of the treatments are discussed. And generally, that's when the patient consents to the treatment and consents to the risks that come along with the treatment. That is informed consent. That's generally what we see signed in the records when we're about to proceed with a procedure. Now, if you shift to shared decision thinking, you begin to see the differences. So when you talk about evaluation with the patient, you're not only getting their history and physical, but you're also beginning to understand the patient's goals and what matters to them and what their lived experience is in the world. Because my experience and my colleagues are very different, right? Our choices would have been very different if we were being offered TAVR versus SAVR. When you talk about treatment, you're bringing your clinical expertise and all of the research and evidence that you have available to you to the table to discuss with the patient. And again, you're talking about viable options for them. You're not talking about something that's not feasible. And you begin to think about equipoise when the risk and benefits perhaps are equal. Then patient choice really becomes quite important. And that's when you begin to talk about the risk and benefits of each option that's available to the patient, not just the one that you presented with informed consent, but all of the options that are available to that patient. And then there's some deliberation. You have discussion about which risk and benefits might weigh more heavily in one direction or another. And that helps determine what the treatment path will be. It's at that point in time that the patient and you decide on a treatment path and then you can fast forward into informed consent. So it's a little bit different way of thinking about how you have your conversations with patients. So this is a little bit different way of thinking about the same information that we've been discussing. This was a slide, believe it or not, that was published back early in the in the 1990s. And we're still using it today to help us describe how we think about shared decision making. But typically we're very good as providers around providing knowledge transfer to the patients. So I've been in many, many conversations with providers where they're providing all sorts of data around, you know, pacemaker rates and bleeding rates and death and stroke rates and those sorts of things. And for some patients, gosh, it makes their head spin. And other patients, they want even more detail than what we can provide them in that short clinic visit. But the fact of the matter is we often stop at the knowledge transfer and we fail to move on to step two and three, where we're actually eliciting patients' goals and their worldview. And how is all of this knowledge that we've just given them, how is it actually relevant to the patient? Does it even make sense to them? So these are the things that we really encourage you to think about when you're having conversations with your patients. So I wanna pause for a second and talk about the registry. So a few months ago, you started to see that this was part of the NCD, our registry component. And here's the dictionary description of how our regulatory agencies and our professional societies think about shared decision-making. Again, what they're saying is that it's a shared communication between patients and providers. And that's when you know that true shared decision-making has happened. So they're framing it for us in a way that it helps to make sense of the world for patients. And so to talk about how to make this happen within the registry, I wanna just kind of take a step back and help you understand that the registry is not prescribing how you should do it. They're just asking, is there evidence that you do do this in your conversations with patients and your evaluations with patients, that there's actually evidence in the record that shared decision-making is occurring. So I wanted to just take a second to kind of walk you through how that will look in the registry. So when you're looking at the sequence for shared decision-making, sequence 14732, essentially what they're asking is, is there evidence within your healthcare record that shared decision-making has occurred? And the answer is just a simple yes or no. It's as simple as that. So if your answer is no, we're gonna move on to the next series of data elements. If your answer is yes, then you're gonna go to the next sequence, which is sequence 14733. And that's saying, if there is evidence of shared decision-making in your record, did you use a decision aid? And again, it's a yes or no answer. They're not prescribing which aid you should use. They're not saying you must use one. They're just asking the question, has a decision aid been used? And if your answer is yes to that, there is one more sequence, and that's 14734. And what they're seeking to understand is, what was the tool you used? So it's really, as the registry always does for us, is a way to collect quality data. That's what they're asking us to do within the healthcare record. So how do we get this all done? I know there's been lots and lots of questions around this. What's the right tool? What's the correct language within our healthcare record? And I really wanna just be clear that anything that I'm going to talk about for the next little bit is really, they're just tools. There's not a magic bullet. And I highly would recommend that you find what works best for you and your team. I found along the way, as I mentioned, my go-to phrase is, help me understand what matters most to you. Help me understand what your goal of care is. And in our healthcare record, that's how we think about it. That's how we language our conversations with patients. But that's our style and what works for us. For others, something more formal like a tool may be exactly more helpful for you. So I'm going to walk you through a couple models that are here that are available to you. Now, there's certainly others out there, and I do wanna put out my own personal bias around decision aids. So I have a couple of worries about them. One, I worry that when we use a tool, the intent is not necessarily as the tool was designed and intended initially, but rather to just fill a box somewhere on the registry. And that's not at all what we're trying to accomplish. If you go back to my original conversation about why shared decision-making is so important, how valuable it is to getting things right for patients, then it's not about checking a box on the registry. It's about what is the tool that we need that can best facilitate those conversations with patients. So anything that I'm giving you, again, is not a magic bullet. It's just a few examples of how it might work for your team. But I would highly encourage you to sit down with your team and work through what might be best, what might be the best approach so that you can systematically assure that this is happening every time with every conversation with every patient. And think about it, maybe not even within the realm of structural heart, but in all sorts of things. When they're coming in for these grueling days in your clinic and having a conversation with them upfront about what would work better, would they rather come in for an entire long day and be done or would they rather break it up a little bit and have to travel back and forth? Shared decision-making can happen anywhere in a multitude of different ways that you can approach it. So that's my bias number one. And bias number two, I wanna just put out there also is that if you are using a tool, just be sure that it's up to date because these can get updated just before, by the time we blink our eyes, there's new innovative things that are happening all the time, new research data that's coming out all the time. So just make sure that you have tools that are up to date. And I'll give you an example. In my own practice, I was shocked to hear one time that some nurse somewhere was doing a great job and she had ordered a whole bunch of tools that we had used way back in the day with little figures that show data around, this many patients will not be alive after the end of one year or two and this many people will have stroke and that sort of thing. And she was still giving those out to patients to take home with them, which was a lovely thing to do but the research data on those was way outdated. So we had to make sure that we were going through and not having anything hidden away that people would get their hands on that would help, that would maybe influence their decision in a way that was not particularly helpful to today's current environment. So with that said, I wanna talk about a couple of different tools. Now, this one is right out of ACC, the CardioSmart. If you have done anything around patient education, you're probably familiar with the CardioSmart component of ACC, it's incredibly helpful. Now, both of these that I will talk about are downloadable. Both of them want you to use them, feel free to incorporate them into your healthcare records, just please acknowledge where you got them from the source document. But this one out of CardioSmart is very helpful. If you click through this particular tool, you'll see there's a lot of information around valvular heart disease in general. And there's a tool that will help patients understand how to make decisions that make sense for them. So this is great, it's written at a level that patients can understand, they can take it home, they can work through with their families, you can sit down and work through it together with them, but it's definitely a valuable tool to start conversation with. This is the next one that I would recommend and it's the Ottawa Personal Decision Guide. The reason that I like this one so much is because it actually does highlight what the patient goals are. So the idea behind this tool is to really help solidify for the patients what their questions are ahead of time. So there's a couple of different ways that you can use this. We actually, I mentioned, we have a Center for Shared Decision Making and part of that work is actually helping to educate and mentor our young providers that are coming into practice. So for those of them that are taking the course, they can participate in this model where they use the Ottawa Personal Decision Aid and they have a list of patients that are coming into clinic for patients who are willing to participate as well as providers that are willing to participate. They get a list of the clinic patients ahead of time and they actually contact the patient with this document and they walk them through it and they help them to say, you know, to sort out what are the questions? What do you know about the disease entity that you're going to be seeing the provider for? What are the questions that you have that need to be answered right away? And what are the decisions that can possibly wait a little bit? And what would be the reason to consider one option over another? And it really helps them to just sort of sort that out before they ever even come to the provider. Sometimes that's the most efficient way to actually get right down to what it is that's really concerning the patient. You know, we can give them this whole barrage of information and what they really want to know is, you know, how long am I going to have to be in the hospital or, you know, what time am I going to get out of here for my evaluation because my bus is going to leave in 20 minutes. So it really helps make the conversation more efficient. The positive thing about this tool also is that it can be downloaded into your electronic health record. So then after it's been worked through with the patient, either independently through their own, you know, portals in their healthcare record, or, you know, you can give it in a paper format and talk with them when they get roomed into the room. But the provider has this information beforehand and they can, you know, it helps kind of zone in on what it is that is really important to the patient for that particular visit. So definitely a good tool to think about using. Now, I mentioned, you know, I'm a baby boomer and I tend to not want to just hand out tools. I tend to want to sit down with people and look them in the eye and read their body language and try to figure out which patients are, you know, wanting more information, which want less, which ones are we missing the mark on entirely and we have to shift gears a little bit. So we have always, in our organization, used that little question about what matters most to you. And initially it was me that was asking the questions and bringing that information back to the provider in the form of our heart failure team, excuse me, our heart team meetings. But over time, it was the physicians that really wanted to get the information from the patients. They wanted themselves to have those rich conversations with the patients. So they began to ask the questions themselves. And over time, we started to develop these templates. Now, all of the providers have a little something different that they utilize within their record. And as I said, you know, finding your catchphrase that gets the patient talking right away. Everyone has a little bit different way to approach that. So I'll show you a couple of examples that you'll see if you were to audit our healthcare records. Again, this is not a magic bullet for you, but it is just some way and some format to bring back to your teams for discussion around how you might accomplish this in terms of a registry requirement. But more importantly, how can we accomplish this because it's the right thing to do for patients? So this is an example right out of a clinical chart that I pulled on just very recently. And, you know, there's all the history and physical, there was a lot of documentation around the various, you know, echo reports and all of that within the record. And then at the very end, this is how it summed up. It says, at today's visit, we discussed aortic valve stenosis. We discussed treatment options, including medical therapy, surgical aortic valve replacement, palliation, transcatheter aortic valve replacement. We discussed the intricacies of each approach and the rationale for considering one versus another. We also reviewed the data suggesting equipoise between a surgical approach and a transcatheter approach. The patient states her preference to move forward with TAVR, if feasible, following review of the CTA. So in this case, the patient had come in and they hadn't had their imaging done yet, but they had lots of conversation around what the options might be, knowing that when we all reviewed the CTA, there might be something on there that would move the decision, make the risk or the benefits more apparent for one option over another. And the patient left knowing that that was what the situation was going to be. And they were aware that we would call them once we had the results of the CAT scans. And we would discuss again, what we think is the approach that, as we discussed, that might fit for the patient. So for example, she was leaning towards TAVR, but there may have been something on the CAT scan that would say, actually, as we reviewed this, it may be safer for you to consider open-heart surgery and here are the reasons why, and what do you think about that? So that would be part two of her evaluation process. But this is a typical example of what you'll see in our healthcare record. So this is a template that our data extractors will look for, because they know it's there. I also will talk about it in my own notes. When I'm first meeting the patient, I will talk about the fact that we're scheduling them for a visit specifically for shared decision-making. And I'll also talk about it when I'm scheduling the patient again. So after we've had our heart team meeting, everyone is concurring. I will, or one of my colleagues will contact the patient and we'll get them set up for their procedure. But it's not without, again, a last conversation with them about this is what you talked about when you were here at your visit. This is what the heart team said when we met. How do you feel about that? What is your preference as you hear about this? And when the patient declares that they would like to move forward with, say, the TAVR option, then that gets recorded also in their healthcare record based on our conversation. Patient states their preference to move forward as discussed. And so it's very clear to our data extractors that the conversations have happened every step of the way. So we would encourage you, whatever model you choose to use, that it's really clear for the people that are trying to pour through hundreds of records that they can easily find this information. So here's another example. This is a different provider on our team, and this is how they set up their template. So again, the office note or hospital note has all of the detail that you can imagine about the patient, about their social history and their comorbidities and everything that we found on their diagnostic evaluations is all there. And at the wrap-up of that clinical documentation, you're going to see these three headers. One is the interventional consideration, the other is the surgical consideration, and the third is the patient goal of care. And I'll give you a little example of how that might work and how it might look in real life. So for example, the patient has come into clinic, they've had all of their evaluation, they've actually seen our surgical colleague, and now they're seeing the interventionalist. And he's already done the cath on the patient. So he addresses that in the notes, and then he says under the interventional consideration that the patient has two-vessel disease, that they've discussed the pros and cons of open-heart surgery versus, you know, with CABG AVR versus TAVR and PCI. And, you know, there's some language around that within this section that talks about the risks and benefits. And then under the surgical consideration, you will see something like my surgical colleague but met with the patient earlier today. We had a conversation that indicated he felt the patient based on STS score and physical evaluation and conversation with the patient that they were well-suited for surgical intervention if that's what their preference was. And then the patient stated goal within this note is exactly what we described. The patient states, you know, I don't ever want my chest opened again. I favor TAVR or whatever the reasons is, you know. So to give you a couple more examples around that, the interventional consideration, sometimes you'll see things like, you know, there's a calcium burden within the LBOT that's worrisome, or we may not get as adequate a seal, or maybe there's multi-vessel disease that we have found, a multi-valve disease that we have found and the patient may be better suited for surgery, but the patient is saying under the goal section of care, you know, I've got an elderly or a debilitated wife at home and I have to be able to lift her up. I don't have social support. I need to be back on my feet. I can't spend time recovering from a sternotomy. So those are the kinds of things that you'll see within these categories that then help to determine what ultimately the goal of care is for the patient. And then any provider under any circumstance, anytime in the middle of the night, if someone's coming into an ED, they can pull this up and they can see exactly what the plan of care is, what the patient's choices were, how we've processed, what is next steps for the patient. So these are just a couple of examples. You know, we have multiple providers in our organization. They all have a template that looks a little bit different, but it's based on, you know, their ease of documentation, what makes most sense for them, how they typically language their conversations with patients, but the elements are all there on all of the notes that we see now. And so, again, these are just examples of something that you might want to consider utilizing, or at a minimum, bringing back to your team when you have logistic meetings with your team to begin the conversations about how are we going to meet this component of the essential criteria for patients. So there are a lot of resources out there. There's a multitude of research around shared decision-making and the importance of it. It highlights how we certainly, as I mentioned, have an opportunity to mentor and educate each other. There are books that have been written under the cardiology forum with notations around shared decision-making and chapters. There's also resources at your fingertips from the ACC that I've highlighted here. This slide, I pilfered from Joan Michael, so thank you so much, Joan, for letting me take this right out of your hands. This is a great area for you to go if you want more information around how do you implement shared decision-making within your programs. Essentially, just go to the cbquality.acc.org and just select down on the clinical resources and you'll see an option for shared decision-making there. Another thing to be considering when you're thinking about competencies for shared decision-making right now, of course, we're talking about the registry, but just so that you're aware, there's also core competencies if you're considering certifying your program. There's competencies that will be important for you to understand in terms of being able to document your competencies around shared decision-making for certification. Now, again, this is not the only reason that you want to do any of these things. The real reason is because you simply want to build competency because it's the right thing to do. But I did want to take a second to walk you through a little bit of this as well. Essentially, what the ACC is saying, this list, forgive me, was a list that was developed back in 2012, I believe, and there was a group of thought leaders that came together from multiple countries, including the US, Germany, France, the UK, and Canada, and they came together to discuss exactly this issue. What are the competencies around shared decision-making? How do we formalize this in some way? After several days of lengthy discussions around this, there was not a lot of consensus on how to move forward with actually implementing this. Again, I really honor the people at the registry and ACC for, again, bringing this to the forefront. But at any rate, what they did agree on were competencies in two areas. One was a relationship competency, and that's based on the list that you see here. The things that seem evident to us, but not necessarily, where we sometimes need reminders around these skills, the listening skills, language skills, our nonverbal skills, and certainly cultural and age-appropriateness. I gave you an example around age earlier in our conversation today, but the second thing that they reached consensus around was also the risk competency, and what I mean by that is that you really have to assure that providers are coming to the table with the latest and best research that is possibly available for patients, so that we're offering them something based on what the most current best practice is. Those were the two things, that we need to be able to listen and speak to our patients in ways that they can hear us, and also provide them with the best options based on clinical evidence that we possibly can. I want to spend just a few minutes on these skills, because they kind of resonated for me recently. I've shared this with some of my colleagues and friends, that early, early in the COVID experience, I suffered from COVID, and I'm still a long hauler, and I have to say, we learned a lot during that time, one of which is that the health disparity that is occurring still in our nation, we own that in a multitude of ways. The way we speak to patients, the way we hear them and listen and approach patient care, we own that as providers, and I share my own experience, because as I said, my COVID experience was way back in the day when we were still thinking that you had to be traveling internationally in order to have your symptoms were actually related to COVID, so people were not even being tested in those early days, and then when I started to experience symptoms of long hauler, it was hard to get providers to listen, because they didn't actually fit into anything that we knew about. There was nothing written about taste and smell and joint pain and fatigue and those sorts of things that went on for weeks and months and perhaps years now, so, you know, here I am, a Caucasian woman, blue-eyed, intelligent, I've been educated, I work with some of the best providers on the planet in a place that really is quite privileged, and yet I had difficulty getting people to necessarily understand or listen to me when I was talking about what was happening to me medically, someone who was previously very, very healthy without a single, single other medical issue, so, you know, here I am with all of this privilege, and I had difficulty, so imagine the patient who can't hear you, or the patient who's, you know, really elderly, or the patient maybe who came to you because their heart disease was a result of opioid use, or think about people who have cultural or religious concerns that really are unfamiliar to us, so we might not think of ourselves as being biased, but yet we have these subtle and, you know, unknown biases that they're just not even in our own awarenesses, so I would encourage you to think about how do we look at our listening and language and nonverbal skills, and how does that come across to patients in every communication that we have with them, you know, do we treat someone who's very well-educated and all pulled together the same as we treat someone who's maybe disheveled and doesn't smell so good, maybe they don't have all of their teeth and they're a little bit simple, you know, do we give them the same amount of time, do we offer them the same options, do we just assume that maybe they're non-compliant so we're not even going to offer this option to them, those are the things that we really challenge you to think about in terms of shared decision-making. When you think about the COVID experience and what it's done to healthcare in general, you know, many of us are struggling to not have, we don't have open beds available to us or supplies, whether it's human or otherwise, resources available to us, so how does that come across when we speak to patients, do we come in and are we harried because we really don't have time because we're short-staffed, you know, are they picking up on that and afraid to ask us questions because we look incredibly short-staffed and busy, are they afraid to ask, you know, what did we mean by something or maybe they couldn't hear us because we have our face shields on, so are, you know, are they feeling that warmth from us or we are, are we actually inviting them in to talk with us more in detail about what their concerns are, so those are the things that I would encourage you always to be thinking about, again, with every single interaction you have with patients. I had a colleague that shared something with me in the last couple of days that really resonated as I thought about these skills that we bring to the table for patients. It was a little meme and it said, the whole world is short-staffed, not only just healthcare, so please be kind to those that actually show up and, you know, it's just so relevant as we think about the patients under our care and how responsible are we for the health disparities that have been created and continue to be created as we're moving forward in this new paradigm of healthcare that none of us really even quite understand just yet. So I want to just take a second to recap and then we'll turn it over, I think, for conversation with Joan, but just to kind of make sure that we're always thinking about for patients are all the viable options available to the patient, have they all been discussed with them. We hear over and over again stories as we talk across the nation about patients who, you know, they might have been appropriate for TAVR, but gosh we don't offer it here and I didn't bother offering it to them because I know they won't travel. You know, those are the kinds of conversations we hear pretty regularly or maybe our beds are full and we can't quite get them in, but should we be offering the option to maybe go down the road to a provider that has available beds because the patient really needs to be cared for. So really thinking through are all the viable options on the table for the patients. Does the patient understand what all the options are and do they understand what the risk and benefits of each option is and how do those risk and benefits resonate for them. It might seem obvious to us but less obvious to the patient. We want to always elicit what matters most to the patient and that we want to be certain that all the treatment choices are apparent to all team members. So as I mentioned, you know, if they're coming in maybe at another organization that has shared documents with us, they can see our health care record, but they're landing in their home ED. So when they pull up the record they can see we've had this discussion the patient is interested in moving forward with TAVR and now they're in full-blown heart failure so perhaps they need to be transferred to your organization. Those sorts of things. And last but not least, I didn't put a bullet here but I want to really drive home the point that the journey is always the patient's journey. It's not our journey and sometimes the choices that they make don't seem like necessarily the best choices or the choices that we would make, but it's their journey. It's their health care journey and we always have to keep that in mind. So again I really want to thank Joan and her team for providing the opportunity to talk about this in the framework that it's really not about the registry, it's really about the right thing to do for patients. So thank you all so much and I would love to invite Joan back in for some questions and conversations with all of you. Thank you, Roseanne. That was wow is the word that comes to mind. I enjoyed listening to you and you know a couple takeaway points. It is the patient's journey, you know, we need to walk in their shoes to understand why are they there on their own initiation? Is it a daughter or son that's pushing them? And it's very difficult during COVID and if the patient is elderly to really, you know, get that over telehealth or get that through a mailer. It's that face-to-face conversation I think that that is most helpful. You said something at the beginning that I think I hadn't connected with shared decision. You said a lot that's connecting me with shared decision making but with low risk, our initial patient population was a mean age of 82 and with low risk doesn't necessarily mean low risk means low age but we're seeing that age creep down a little bit and it's so more important now than ever to have that conversation about what's planned, what's step two of that plan because if and we're hearing this around the country, the younger patients, younger even the fact of being childbearing that have to have that decision where they're advocating for themselves to have TAVR so they don't have to be on anticoagulant but then do you take the time to have the conversation to say, well, no now that we'll need another plan for, you know, down the road. Has that come up at Dartmouth or in your practice with your colleagues that it's more important now than ever I think to be discussing shared decision making for that patient population? Absolutely. Thank you for asking that particular question, Joan. It really is, you know, we talk about it as life planning and, you know, again, I like to regularly remind my colleagues that age isn't the determination anymore. It's one of the factors but, you know, there's so many pieces that come into play and we used to think it was so complicated when we first started but it's incredibly more complicated now for the reasons, you know, that you mentioned. Do you think someone in childbearing age that if they have a mechanical valve they're going to be having Coumadin, you know, for a lifetime? So you definitely have to have those conversations and part of that is thinking about what your future cardiac life will be like. So, for example, maybe you're at risk for having coronary artery disease and what if you do need to then have some intervention on your arteries or maybe there's a little leak in that mitral valve too and what might that mean for you and so definitely you have to be raising those points for the patient and helping them understand that the choice they make today could ultimately affect the choices down the line. You know, one of the things that continues to come up and I kind of chuckle now is, you know, we don't know the length of the lifetime of the valve and here we are more than a decade later and the valves are, you know, doing well. So the conversations really have to be current and they have to be relevant to that particular patient. So it doesn't make sense to talk to a 60-year-old in the same way that you're going to talk to a 90-year-old. The issues and concerns are different and you really have to fine-tune it to what's relevant to that particular patient. Right and I agree and with our age spread are optional for options for patients and again not to make this about COVID but now more than ever it's important to pause and to understand the anxiety that comes with everything surrounding that as well as their need for medical care and how important it is to take the time to discuss patients options and why are you here? Am I here because my daughter made me come or are you here because you want to be here? Just maybe one quick question about if I am a program starting out believing in shared decision making is there one tip to is it a champion? Is it a meeting within the heart team leadership before it's implemented? Any success story that you've heard about how do I get buy-in to something new to an already resourced short short-staffed busy group and say oh wait a minute we want you to add another piece into the conversation. I think you explain that beautifully and I would wish this would be a mandatory session for every TAVR site but is there one example of a champion or who carries the banner for this to be implemented in a hospital? Yeah thank you for that that's also a great question. So you know I think as program leaders we do hold that responsibility and you can sometimes bump up against some resistance around that as I described earlier. We often think that we're really great communicators but you know if you if you keep an open mind and peel back the onion or pick up the carpet and look for the you know the the soil under the carpet kind of thing you're going to realize that we all could learn from it. So having a champion is actually a wonderful thing if it's your valve coordinator or one of your clinicians on the team it's it's a good thing to do but I would encourage people to consider using your research and your data. Research supports the fact that this is really more efficient and my own my experience will support that as well. I can tell you every single time when I hone in on a question it totally reduces the amount of time I spend in clinic or on the phone with patients because you're not talking about things that aren't relevant to them you're talking about really what matters what do they need to know what is important to them and so it really does become more efficient. The other thing is that it financially it's more efficient too because we're not offering things to people that they really don't want you know you're really beginning to discover what it is like helping them to understand what exactly are they signing up for and that was kind of the impetus when I talked about my friend Mr. Snow it was I wasn't clear that he knew what he was signing on the dotted line for when we talked with him about TAVR and when I asked that very simple question it literally took seconds and he did not hesitate for a second. I've never found a patient that hesitates ever even for people who may have some cognitive impairment they're always able to give me an answer and it does just completely shift the conversation towards what what is the appropriate care for patients so you're not going down a road of like no return when the train gets on the track and you can't get it off so it's really more efficient and I would stand firm on that there's definitely research articles out there that I'm happy to share with anyone you're welcome to give people my contact information but there's definitely research that supports that it actually is more efficient and more financially feasible when you incorporate your decision making into your programs. Well thank you very much Rosanne you've made Dartmouth very proud and and again as I said you have been a supporter of the TBT registry from the beginning and this is the next success story that you that you shared thank you so much for your presentation today. You're welcome Joan and thank you for having me I was just thrilled when I received the invitation I can't say enough how I am so honored and thrilled that you you brought this to the forefront again thank you. Thank you.

shared decision-making

patient care

clinical evidence

treatment option

patient goals

patient preferences

patient outcomes

informed consent

healthcare records