Video: Partnering with Healthcare Providers — Robert C. Kowal, MD, PhD, FHRS and Mellanie True Hills, CSP
Getting the Best Care, from the 2015 Atrial Fibrillation Patient Conference
September 16, 2015
In the Partnering with Your Healthcare Providers session at the 2015 Get in Rhythm. Stay in Rhythm.TM Atrial Fibrillation Patient Conference, Robert C. Kowal, MD, PhD, FHRS spoke about getting the most from your doctors, including:
- what kind of doctor is likely to manage your care
- what is involved in managing AF care
- when do patients typically get referred to specialists, and
- what are the challenges with seeing specialists
Following Dr. Kowal, Mellanie True Hills discussed communicating with your healthcare providers and resources that can help patients.
In a subsequent dialogue, Dr. Kowal and Mellanie discussed the following topics:
- how to know if you have the right doctor
- how much variation doctors see in AF patient symptoms
- what to do if the relationship is just not working
- what patients do that drive doctors nuts
- the difficulty of getting patient records
- how doctors and patients can use mobile health together, and
- what makes the ideal “engaged patient”
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About Robert Kowal, MD, PhD, FHRS
Dr. Robert Kowal graduated from Yale University and received his MD and PhD degrees from UT Southwestern Medical Center. He completed his medical internship, residency, and cardiology fellowship at Harvard Medical School/Brigham and Women’s Hospital and went on to study cardiac electrophysiology.
He currently practices at Baylor Heart and Vascular Hospital. While performing a broad spectrum of device implantation procedures, from pacemakers to multi-lead defibrillators, his main focus is the management of complex arrhythmias such as atrial fibrillation and ventricular tachycardia. His approaches involve both non-invasive medical therapy and catheter-based ablation procedures. He has been and is currently involved in research on many cutting-edge technologies including cryoballoon ablation and FIRM mapping for atrial fibrillation, left atrial appendage closure and the role of renal denervation in the treatment of arrhythmia.
He has taken a national leadership role serving on the Board of Trustees at the Heart Rhythm Society and is on the editorial board of several scientific journals.
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Dr. Kowal: What I wanted to do, with Mellanie as a tag team, is kind of talk about the interaction between patients and doctors from both of our perspectives. And the couple of slides I give are just going to be a framework. I’ve already thought in listening about a couple other things that came up to my mind where I said “Oh, I wish I had put those in the slides,” but hopefully, we’ll have those things come up in a discussion.
But managing the doctor/patient interaction is, on the one hand, easier now because there’s been never more information available to patients through organizations like Mellanie’s or other things on the Internet. In fact, I actually send some of my patients to the physician sites for information and tell them, “Just tell them you’re a physician and get on there,” and they’ll get all the information.
[00:01:00] At the same time, with costs of medicine, the way things are changing, you have less and less face-time with your doctors just because of the pressures that we all face in the medical world. So you have to optimize that time really well. So I wanted to give a couple slide overview…for most of you, this may not be new. But for some of you who just had a new diagnosis of afib, this may be enlightening as to why the interactions are the way they are.
So first off, who is the doctor who is taking primary responsibility of your atrial fibrillation? And to a large degree, that depends on how it was discovered. And so, if it’s discovered in the office, you just get an EKG, they listen to you, you’re irregular. Or if you just came in and said “You know, I’m not quite feeling that well” and afib is discovered, typically, the primary care physician will be the one who takes over that early management of atrial fibrillation. However, if you’re symptomatic enough to go to the hospital or it develops while you’re in the hospital, you’re much more likely to then have a cardiologist or an electrophysiologist consulted and be involved in the care immediately.
[00:02:00] So that’s an important distinction of why people get involved up front.
And then, you’ve heard this theme over and over today. But essentially, that physician taking care of you will treat you, for the most part, based on how you feel. And we’ll push the stroke issue aside. But in terms of managing the atrial fibrillation itself, a lot of it is based on how you feel. So if you’re not open about how you’re feeling, you’re not necessarily going to get the best care.
So, if you have minimal symptoms, or you don’t even know you have atrial fibrillation, your primary care, or the person primarily responsible, your primary care person will probably hold on to you in the management and that’s based on the AFFIRM trial, which you heard about. I’m going to mention that again, which says that kind of simpler approaches are just fine.
[00:03:00] So then the question is, “What prompts referral?” And then, oddly enough, “What prevents referral?” And we’ll talk in the next few slides about what prompts referral to a cardiologist or an electrophysiologist. But understand, too, that sometimes, there are forces that prevent referral that include things that don’t even relate to you. If the last two patients referred out had a complication, your doctor has a sense of what’s called “recency bias”, where they may say “Whoa, the last two times I did this, I think bad things happened. I’m holding onto this patient for their own sake.”
So a lot of things come into play with whether they choose to push you to the next person. But in general, what prompts referral is the fact that care has several components. There’s a stroke prevention rate component, there’s a rate control/rate management component, and there’s a symptom or rhythm management component. And most primary care providers feel completely comfortable managing stroke prevention, and they feel comfortable managing rate control.
[00:04:00] But they don’t really feel comfortable managing rhythm control. You don’t see primary care providers often prescribing antiarrhythmic drugs.
So what then prompts the referral? A variety of things. Patient age. If you have afib and you’re under 50, 55, you are already an outlier. And outliers tend to be referred and for good reason, because they don’t fit typical patterns. If you have a complex history of medical conditions, so afib is part of multiple other issues, either cardiac or non-cardiac, people will tend to refer you for more specialized care. If you have other, and this fits in, if you have other heart disease, if you have valvular disease, if you have coronary artery disease, congenital heart disease, you’re more likely to be moved on to a specialist.
If your rate control becomes difficult to manage, even if you don’t have symptoms; in other words, you’re coming into the office, you feel fine, but your heart rate is 110, 120 all the time, people feel uncomfortable with that for a variety of reasons.
[00:05:00] They’re going to push you on. And finally and probably the most significant reason is if you have ongoing symptoms. If you’re feeling fatigued, if you feel your heart is skipping and jumping. The best patient description of afib I’ve had was the tennis ball in a washing machine or a dryer. And I think everyone in the room can identify with that.
So just to step back again, you’ve heard this a bunch of times, AFFIRM has been used to justify a minimalist approach to afib. And again, I want to reiterate this, you can’t hear this one enough. It was a fantastic trial of over 5,000 patients, but what it compared was not rate control to rhythm control. It was a strategy of rate control in a population of patients to a strategy of trying to maintain sinus rhythm in a population of patients.
[00:06:00] Not everyone in the rhythm control arm was in sinus rhythm and not everyone in the rate control arm was in atrial fibrillation.
And all of these patients by definition had to have either no symptoms or minimal symptoms. And you’ve seen this slide, what that showed is it was really no mortality benefit to rhythm control versus rate control. But it didn’t really tell us what to do with people who were symptomatic, and it did not tell us that people don’t do better in sinus rhythm. There are some sub-studies that suggest otherwise. So when you look at an interpretation of trials, it’s very important to know that the conclusion is really justified by the data.
So what are the pieces of management that a primary care provider or your specialist are thinking about? And this slide is complicated and busy for a reason. It’s to let you know that we’re thinking about a lot of different things when we see you.
[00:07:00] Stroke prevention, you’ve heard about. The use of blood thinners, devices. You’ve already heard about the problems with aspirin and Plavix. For years, we were asked, “Well, why can’t I just be on aspirin and Plavix?” Well, it hadn’t been tested and once it was tested, it wasn’t as good. So, I’m not going to talk about that.
Rate control, again, we’re trying to look at a simpler set of medicines that almost all providers are comfortable prescribing, mainly beta blockers and calcium channel blockers. In far fewer numbers of people where rate control isn’t working with medications, we can use a combination procedure, called an AV node ablation, where the conduction system in the heart is ablated or destroyed, and then a pacemaker is put in to control the heart rate. That can be very effective for symptoms, but it leaves people dependent on a pacemaker. So we use that very judiciously.
[00:08:00] And then, there’s the whole array of rhythm management. So on the other side of this is when you are having symptoms and we want to get you back into sinus rhythm, there’s a variety of approaches to this as well. There’s a series of complex medications called antiarrhythmic drugs. There are about five of these on the market that we work with routinely. Each of those have distinct issues and each of those work better or worse depending on different patient populations. So we’re having to think about those factors.
Catheter ablation, you’re going to hear about this afternoon. I’ve got a group of real leaders in the field who are going to present different aspects of ablation. You’re going to hear even after that about AF surgery, which often can occur in combination with other surgery you may need. But just as importantly, there are standalone surgeries for atrial fibrillation. And more and more, there are combination approaches of each of these to get to the final goal of keeping you in sinus rhythm, if that’s how you feel better.
[00:09:00] The other issues that are important that a doctor is thinking about, and when you’re interacting with your physician, is the timing. How long you’ve been in atrial fibrillation is really critical to the response you get from these different therapies. If you’ve been in atrial fibrillation under a year, what I consider as treatment strategies are very different than when you walk in with eight or ten years of atrial fibrillation. And then, what you heard about from Dr. Day and you’ll hear about more tomorrow, is something that’s really emerged as very critical, is what are the other issues going on in your life? High blood pressure, sleep apnea, obesity; there are other issues you’ve heard about. If those factors aren’t managed, we can ablate, we can treat, we can do all the things we want; they won’t be successful in the long term. And we all talk about studies with one-year outcomes. For you all, you want outcomes that are 20 and 30-year outcomes.
[00:10:00] And so, the message that I think you need to want to hear from your doctor and if they’re not saying this, you need to think about someone else, is this is not a quick fix problem. It is a lifelong issue. So that even if you’re in normal rhythm, you’re still always considering a stroke prevention strategy. You’re still always considering a management of sleep apnea or your nutrition or hypertension. So those are all important issues. It’s to the point where if I have a patient with sleep apnea who refuses to use CPAP, I tend not to take them for an ablation. They’ve got to meet me halfway.
So when do you want to see a specialist? When you’re not sure your stroke risk is being properly addressed, you want to see someone who knows more about stroke risk than the person you’re seeing. When you feel limited by your atrial fibrillation and your doctor tells you there’s nothing else to offer. This is one of these double-edged swords, because if your physician is someone who is not a specialist, you may be able to get more information about what’s out there.
[00:11:00] You also want to be careful not to specialist shop, and I’m going to get to that in a minute.
And I think this is an important thing. If you’re not comfortable with your physician, find someone you are comfortable with. And don’t make it just that it’s not the message you want to hear. There’s got to be a relationship where you’re comfortable interacting. And if you’re not getting answers to your questions, if you feel like you’re being kind of blown off, it’s time to find someone else. I think most physicians now, more than ever, are really conscious, even in the days where we’re limited in time, of really trying to understand what patient concerns are, more so than 10, 15, 20 years ago.
Though that said, “Be careful, there are problems with specialists.” Outcomes are directly related to experience. So if you’re seeing someone who is not very experienced, you’re going to get a different answer, a different array of options than someone who has been doing this for a lot longer.
[00:12:00] There are unknowns and black boxes with afib. I think what you’ll hear in the afternoon panel on ablation is a variety of different approaches and techniques, and that’s just an example of the fact that there’s a lot we don’t know.
No doctor has all the answers. But be careful of the problem of perpetual dissatisfaction. Because if you’re always unhappy with what you hear and the fact, you can’t come to grips with the fact, that we don’t have answers all the time, you’ll just keep shopping for more and more doctors, and that doesn’t lead to better care. In the end, it leads to worse care, because there’s a lot of repetition of care at that point. Related to that is the more specialists you see, the more likely you are to have a complex procedure, because if you keep hunting for someone who will do a procedure, you will find someone who will do a procedure.
And finally, doctors love engaged patients to a point.
[00:13:00] I love it when people have been on the Internet, have some background, know what they’re talking about, have direct questions. But if they get obsessed with the same issues over and over, it becomes difficult and it tries the relationship. So it’s a balance.
Be sure you’re armed with the most information possible. Make sure you’re getting options laid out in an understandable way. And think about what you want to get out of a consultation before you go into it. There’s nothing worse than walking into a room when you’ve got a busy day and having a patient say “I don’t know why I’m here. Just tell me what to do.” It’s a partnership. And the more you can present your side of the partnership, the better the relationship’s going to be.
So I’m going to stop there. We’ve got a lot of other things to talk about, but that’s just a launching point, I think.
Mellanie: What are some of the things that you can do to make your visits with your doctor and other healthcare providers most effective?
[00:14:00] So the first is really to prepare for your doctor visits, such as how you might prepare for a business meeting. Prioritize what are your top questions and decide what your goals are for your doctor visit, so that you can make sure that you get through the things that are really important. And so, tomorrow, I will share some really great resources to help you. And there are some things that actually provide some questions to ask your doctor about afib and about your treatment.
And doctors really appreciate you being organized. If you come in and you’re not really prepared, and you spend the first five minutes just kind of wandering around, you’re probably not going to get the results you want from that visit with your doctor. So typically, the first thing that my doctors will ask are questions like, “What are the questions that you have that you want to discuss today?” Or, “What do we want to accomplish in our appointment today?”
[00:15:00] So if you think about it with goals in mind of what you want to take away from that appointment, you will probably have a very effective appointment with your doctor. And there may be questions that you want to ask but you’ve just run out of time, so you want to make sure that you ask the most important questions first.
Also, doctors won’t always be able to communicate in a language that we understand because they’re used to dealing with technical terms. And so, one of the patients in our discussion forum said, “You know, we’re not stupid; we just don’t happen to speak the same language as our doctors.” So, if you don’t understand what your doctor is saying, tell him. Ask if they can perhaps explain that a little bit more or say, “I’m not really understanding that.”
[00:16:00] And doctors also tend to talk very fast. So if you find that they’re talking too fast for you, you can tell them that. Say, “Oh, would you be willing to slow down just a little bit? I’m trying to catch it.” Also, it helps if you can bring an advocate with you, a family member that can help you take notes of what the doctor is saying, maybe even record the appointment with permission of the doctor. And I’ll share with you some resources tomorrow about ways that you can advocate for your own care, and that your family members can as well.
One of the challenges that I was alluding to in the question to Dr. Turakhia was around patients not really sharing the full impact that afib has on them.
[00:17:00] And it’s important that you be clear and you be open, and you share completely what the impact is that afib is having on you. Because you may be symptomatic, you may actually have symptoms that are impacting your life. But if the doctor doesn’t know that, then you may not be getting the treatment that you could be getting. So be open and clear about what your symptoms are. And also, the side effects of any medications. If you’re having challenges with some of the medications, let your doctor know that.
And then, this one is perhaps more challenging with women, but some men as well. It’s important to speak in facts, not to speak from emotion. Because if you speak from emotion, some doctors don’t know what to do with that. And in addition, it’s not fact-based, so it’s harder for them to interpret.
[00:18:00] So if you can speak from fact of “This particular medication is causing this,” or “afib is causing me to feel this way,” that actually addresses something that the doctor can do something about.
And then, as Dr. Kowal mentioned, one of the things that gets in the way of communication is really overwhelming your doctor, either with too much data, too many charts, printouts, those kinds of things. Things that have been printed off of the Internet. And they don’t have time to process all that in a short appointment.
So if you can summarize, it’s okay to bring it and let your doctor look over it later and see what impact it might have. But if your doctor walks in and you have this huge stack of printouts like this and you have five to seven minutes with your doctor, he’s going to want to turn and run.
[00:19:00] So it’s important that we prioritize what information we want to bring to our doctors as well, so we can have the most effective visit possible.
And then, ask your doctor about resources that could help you — help you learn about afib and learn about various treatment options. And it’s okay for you to tell your doctor about what resources you have found that are credible as well.
And so, speaking of resources, we give doctors these patient cards — there may have been some on the registration table — but we give them these cards that they can give to patients, so patients know where to go to look for information. So on StopAfib.org, in the menu, you can look for patient and caregiver resources. And that will give you almost everything that is important for afib patients to know. So I encourage you to check that out, so that you’re aware of those resources as well.
[00:20:00] And also, the red puzzle thing that you see is called a quick response code or a QR code, and you can use your smartphone to scan it, and it’ll actually take you directly to our mobile website on your smartphone.
And let me encourage you to check out a couple of resources, a couple of articles that were actually written for doctors and were published in EP Lab Digest (Electrophysiology Lab Digest), but there’s really good information for patients as well. One of them is called “Bridging the Afib Communications Gap” and it is about this Grand Canyon-sized gap in communication between patients and doctors. What we can do to bridge that.
And then, the second one is called “A Matter of Trust.” And that one is how to build adherence with afib patients and it’s about the communications issues that cause us maybe not to get the medications that we need, or cause us not to take our medication, or not to understand how to take our medications properly.
[00:21:00] And so, either of these are available on StopAfib.org. If you’ll put part of the title in the search box in the upper left-hand corner, you will find those.
So let’s move on to our dialogue. Let me throw out a question to you, Dr. Kowal. How does a patient know if they have the right doctor?
Dr. Kowal: Boy, that’s a tough one. And it’s a very tough one. There are some interesting studies about patient satisfaction with physicians having sometimes no bearing on what their knowledge or how expertly they’re caring for them. I think it’s a combination of comfort level in the communication you have, and getting online and looking at reputation and to some degree, training and experience.
[00:22:00] And that’s not to say that someone coming out of fellowship isn’t good. That’s not clear at all, that’s not true at all. I think you have to have a comfort level, but don’t let that comfort level cloud the importance of what they’re telling you as information. If something doesn’t sound right, just because they’re a nice person doesn’t mean it is right.
I wanted to get back, while it was on my mind, about some of the symptom stuff if you could. Because I think this is such a huge topic and I think it’s reassuring to patients when they don’t follow their own symptoms well or understand them well, to understand how much variation physicians see and what we have to think about.
And the first thing I tell patients is, “There is no story that is crazy with afib. I’ve heard it all and none of it means you’re crazy.”
[00:23:00] And it’s gone all the way from one person telling me they knew they were in afib because they felt an overwhelming sense of doom on that day, and then we’d check an EKG and they were an afib. So nothing surprises me.
And the data that supports that is 40, 50 years old where people use Holter monitors and saw that in the same patients, they could have episodes of afib, that they could note that they were in afib and they correlated; they could have episodes of afib that they didn’t know were going on, that’s the whole silent afib and stroke risk issue; and episodes where they would swear they were an afib and they were in normal rhythm.
And I think the only way to explain that one is the mysteries of how the brain works. And the example is, how many of you have reached in your pocket to pick up your vibrating cell phone and there’s no cell phone in your pocket? And the brain takes different pieces of information and turns them into cues and can fool you sometimes. And that’s what’s going on there.
[00:24:00] But one thing we see, and I think this is important, to find a provider that recognizes this issue, is this weird thing that I can’t explain, which is a patient will have afib diagnosed at a routine physician visit, having no symptoms. And they get sent to us and they’re symptom-free; they’re 55, 65. Maybe feel a little funny, you probe, you really can’t get anything out of them. And you say “Okay.” This is something I do a lot now, is “Let’s just cardiovert you once, see what happens. If you feel better, then we know that you’re actually having symptoms and this has just been such an insidious course that you just didn’t notice.” Or they’re not.
And then, what you’ll see is a subset of those people will come back and say, “I feel a ton better.” And then you know you need to be aggressive with it.
[00:25:00] And what’s interesting is if they go back into afib, now they can tell you. Because something about getting them back into sinus rhythm has now turned into an identifying set of symptoms. So don’t necessarily be swayed just because you had asymptomatic atrial fibrillation as the initial diagnosis. You may still be symptomatic if we try something. But again, that doesn’t mean go to a big ablation or a surgery. It means just do something simple to get back to normal.
The flip side is, we have a subset of patients who will come back and say, “Boy, I’ll tell you Dr. Kowal, since you did that cardioversion, I feel like a million bucks.” And you look and they’re in atrial fibrillation again. And their rate is controlled and it’s the great physician dilemma, “Do I tell them or not because they feel great and they are truly asymptomatic?” But if you tell them, the next day, your nurses will get a call, “I feel horrible.”
[00:26:00] So it’s this powerful interplay between symptoms and emotion and all this. So this is why it’s so hard to manage and treat and be a patient with it. It’s really hard.
Mellanie: Afib is so difficult for some patients and others just don’t feel a thing, and that’s just a huge paradox. How could that possibly be?
Dr. Kowal: So in essence, to circle back, you need a physician who understands that, and can help you through that, because that’s normal. It just is what it is. I can’t explain why it is, it just is.
Mellanie: Right. And you brought up an important point that I think is not talked about enough and that is that there are actually people out there, and maybe some here in the room, who went into afib and are in afib all the time and have never been given a chance to be out of afib. There’s not been a cardioversion; there’s been no effort to get them out of afib.
[00:27:00] And you wonder, if they were given a cardioversion, if it would be able to hold, particularly with the sleep apnea and other kinds of things, those lifestyle issues, being treated. It’s possible that they might be able to stay in normal sinus rhythm. And I hear of that so much.
Dr. Kowal: Fortunately, we see this less and less now because there are so many options for afib patients. But those are tough situations. I just had one two weeks ago. Someone’s been in afib for eight years and it’s hard to think we’re really going to get anywhere, and that’s an outlier.
But if we see people who have been an afib two or three years and nothing’s been done, I tend to do some test to see whether sinus rhythm makes a difference. And that may be just coming in for a cardioversion and assessing symptoms over the next few days. Now, there’s a lot of placebo effect of that, but patients with afib are pretty open and they’ll tell you, “You know, I felt no different.”
[00:28:00] And if they say that, okay, we’re going to manage heart rate, we’re going to manage stroke risk, and not subject you to the risk of all these other things. But if you do feel better, then the challenge is, we want to get sinus rhythm; can we? We may or may not be able to.
Mellanie: Absolutely. So let’s talk kind of about the flip side, where the doctor and the patient maybe aren’t communicating. The patient is feeling like the doctor doesn’t understand what they go through, feels like their symptoms are being brushed off or their questions are being brushed off. How does one decide when it’s time to seek out a different doctor? And then, how does one choose?
Dr. Kowal: Yeah, it’s not easy. I think if you’re really serially uncomfortable with the interaction — not the message because if someone tells you bad news, it just may be it is bad news — but if you’re uncomfortable with the interaction, I think you need to look elsewhere.
[00:29:00] And quite honestly, some patients are worried about kind of offending their doctor or this and that. My guess is, if you’re uncomfortable with your physician, they’re uncomfortable with you. And probably both sides are going to be happy if you’re finding somewhere else. And it’s not anything malicious or malignant, it’s just some people don’t click.
And you do find out there physicians who have this problem more than others. But everyone…I have people that just have moved to one of my partners because it didn’t quite work, and vice-versa, and it is fine. I think then, you just need to kind of ask around. Ask your primary care physician who was referring you, “Do you have others?” Because usually, they send to several different people, not just one, for that very reason. And do it in a way that’s not — you don’t want to accuse your primary physician of having bad judgment of who they sent you to — it’s just, “Hey, this didn’t work.”
[00:30:00] Sometimes, you can just ask the doctor themselves and say, “Look, this isn’t working.”
And I’ve even done this where I sense it’s not working. I’ll say, “Look, I don’t sense this is working. Let me give you the names of some other people because you may feel better with that relationship.” Often, just doing that changes it right then and there.
Mellanie: Okay, great. So let me turn to another question and this is, what do patients do that drive doctors nuts?
Dr. Kowal: Oh, yeah, okay. How much time do we have? No, I’m just kidding. You know, you hit on it with some of the data issues. I think sometimes, people can come armed with so many questions, that they lose the forest for the trees. And what happens is, you get so bogged down into these kind of minutiae questions, that you lose the big picture of what’s going on and the big picture goal of therapy.
[00:31:00] I have one patient, for example, there was a discussion before about afib on devices, and he is just consumed by his afib burden on his defibrillator, and if it’s 10% versus 8% versus 9% versus 6%. And I just said, “Look, it is not 50% and it’s not 100%. You’re doing well.”
And this is the years of training, right? I know what those areas are, what the quantification means; patients don’t. Patients tend to get bogged down into details that don’t mean much. And that can become frustrating if you can’t redirect it.
Mellanie: Right, okay. When you and I talked the other day, you were talking about difficulty — and this is not something that patients do — but just the difficulty of getting a patient’s records.
Dr. Kowal: It’s monstrously hard.
Mellanie: And that’s a real challenge for their doctors.
Dr. Kowal: One would think in the era of electronic records that it would be easy and most patients come with that expectation. It’s very hard right now because there isn’t an easy chart to Xerox or send. Most electronic medical records have disjointed sets of scan data that are very hard to read because the scanners are poor. You’re lucky if you get the right pieces of information. I can’t tell you the vast majority of times I get sent an afib patient where there’s no EKG of afib. So if they’ve got paroxysmal afib, I’ve got no documentation that that’s what they have. And it can be a fight to get that. And understand that it’s not just the technology. There are legal issues about getting information. If you haven’t signed the appropriate releases, by law, we can’t get records. So it can be very difficult.
[00:33:00] What I’d recommend is, keep that EKG of afib or A-flutter. Keep that copy of the summary of your procedure note. Again, you don’t want to walk in with a stack this high of medical records, but if you can have the key pieces, your operative reports. I have some patients who walk in with a one-page summary of, “I was diagnosed here. At this point, I was put on flecainide, then it was stopped. Then I had this done.” And so you have these and then an EKG; in about one minute, I can see that and then we can have a really productive discussion. Whereas if I come in with a stack like this, I’ve got to weed through a mess and it’s very difficult.
Mellanie: Right, absolutely. So you’ve alluded a couple of times to monitoring. And to mobile health. So we have here, AliveCor and AfibAlert as sponsors. What is the best way for doctors and patients to use mobile health together?
Dr. Kowal: We’re learning. The answer is I don’t know yet. I keep thinking about this problem. We can even get some of the other physicians to weigh in. I think the one thing that’s very clear is, if you have intermittent afib or you’re trying to manage symptoms and correlate, you can’t do that with a 24-hour Holter monitor; it doesn’t work. A Holter monitor is really good for assessing heart rate variation during the course of a day in someone who is permanently in afib or persistently in afib; otherwise, you need longer tracking.
I think it’s very helpful to have these other monitors. But I think the key is, how do you use the data? And we’re learning right now whether you can use data like that to guide anticoagulation, being off or on. That’s still experimental.
[00:35:00] We use it as a great tool to understand what the real burden is, and how other things we have to do.
I think where physicians are afraid — and some of this is liability risk and some of it is just overwhelmed with data — is what do I do if I’ve got 2,000 patients with daily recordings coming in? I just can’t manage all that. So patients kind of have to control their own data to some extent. At least for now, until we get smarter systems to analyze them for us.
Mellanie: Okay, great. So we’re going to want to open it up for your questions, for Dr. Kowal, as far as communicating and partnering with your healthcare providers. So if you want to come to the microphones. And while we’re doing that, let me ask you, what is the ideal engaged patient like? Obviously, you don’t want one extreme of too much data, but you don’t want them passive, either.
[00:36:00] Dr. Kowal: I think it’s someone who can come in, who kind of knows…comes in with the topic to discuss for that day, can be focused, is interested in their own health, and isn’t passive. Passive people are difficult because when you’re unsure what the right thing to do is, it’s very hard to work with a passive patient. Be engaged with what the options are, throw out your views. If you’re a person who’s less invasive- or less procedural-oriented, those are all important things. That level of give and take is just really helpful to work with.
Mellanie: Is there a question over here? Awesome.
Man: Yes. I had an instance where my heart doctor was basing my afib on EKGs and really wasn’t listening to me. What I’ve learned in listening to you is that there’s a lot of ambiguity in regards to…sometimes, the patient will say they’re in afib and they’re not, and vice-versa. Which is what I’ve learned today, is maybe that’s why the doctor did not listen to me.
So my question is, what about requesting the patient to record daily observations? Electronic observations that can give you a summary. Or working on the elliptical machine where you get an instant diagnosis as to what’s happening. Because the food you eat, relationships and all of that, when I go into afib, the symptoms come later, not at the time.
Dr. Kowal: Yeah, I think it’s very helpful when you have a patient who can do that and is willing to do that, particularly in patients with paroxysmal atrial fibrillation. Most of the time, as most of you know, there’s no clear trigger. But in a subset of patients, there is a direct trigger between certain things they do or eat. And sometimes, you can manage those triggers quite well. We had one person who developed atrial fibrillation when they drank ice cold beverages, but not room temperature or warm ones, and it took a while to sort that out. But when we did, one, it helped manage symptoms for a while. And then when we went to ablation, we actually had them drinking ice water during the ablation, which drove the anesthesiologist crazy. But it actually worked and we could find the triggering site. Now, that’s an outlier, that’s a rarity. But that kind of information is very helpful.
Mellanie: Awesome. I think Stacy was next.
Stacy: Two questions. One, do we have the right to our hospital records to just go get them ourselves so we can prepare that summary?
Dr. Kowal: Oh, sure, yeah. You usually have to make the request. I think the issue is that…again, I’m not a legal expert in all of this. I just–
Stacy: If I sign a release, I’m just looking for–
Dr. Kowal: If you sign releases, I can get them.
Stacy: After seven days in the hospital, I want to know what it was.
Dr. Kowal: You have every right to go get your records and have them…they might charge you $10 or something, I don’t know.
Stacy: Okay, thank you.
Dr. Kowal: But they should be able to get them.
Stacy: You mentioned Holter monitoring and I guess there’s other monitoring devices that maybe we haven’t heard about yet. At what point do you use something like that? Because, sometimes I can feel like I’m having an episode, and sometimes I feel like I’m having an episode all day, every day.
Dr. Kowal: Yeah. And so, I think…the answer is we don’t know all the reasons and times you use them. But when people have ambiguous systems and we’re not sure what’s going on, those are fantastic tools because you can’t be running in to your office for an EKG and you can’t run to the fire station for a rhythm strip all the time.
[00:40:00] So that’s where these tools are incredibly helpful. And then, which tool you use really depends on the frequency of the symptoms. If you’re having symptoms once every three or four days, then one of these two week monitors is fine. If you’re having symptoms once…the hard ones are patients who are having symptoms once every three months. Then it becomes very difficult to find the right tool.
Stacy: How about the flip side of that? Where you’ve had a year’s worth of EKGs and a year’s worth of symptoms, is a monitoring device going to give any additional information to a doctor for treatment?
Dr. Kowal: Again, it depends on the situation.
Stacy: I mean, in afib a lot for a year.
Dr. Kowal: I’m not sure…if we know that that’s going on, then no–
Stacy: You don’t need to monitor?
Dr. Kowal: I don’t need it. We just need to work on your–
Stacy: Okay, that’s what I wanted to know.
Dr. Kowal: If we know that your symptoms, that you have afib and your symptoms seem to correlate pretty well, then we just need to work on figuring out a way to get those symptoms under control.
Stacy: Okay, that’s what I wanted to know. So you don’t need to . . .
Dr. Kowal: Yeah, then we don’t need to keep–
Stacy: If you’re clearly in afib, you don’t need the monitor? Thank you.
Dr. Kowal: Yeah.
Mellanie: Thank you. Craig?
Craig: Thank you. I’d like to hear both from a patient advocate, like yourself, Mellanie, and a physician. At what point should we as patients be able to say, “I need to see the doctor, not the PA or nurse practitioner?” And at what point should we able to say, “This isn’t working, but it could work”? And how do you approach that from both perspectives?
Dr. Kowal: Go ahead. You want to start?
Mellanie: Okay, so I would say, at any point when you feel like it’s not working, it’s perfectly okay to ask if you can see the doctor instead of the PA. It’s certainly a discussion.
[00:42:00] And if it’s just not possible, then it may be time to consider finding a different doctor. It’s important to understand why it’s not possible and there may be insurance reasons. There may be a variety of other reasons. So I think it’s perfectly fine to ask as soon as you get to the point of dissatisfaction.
Dr. Kowal: It’s a tough one to answer because we’ve used nurse practitioners a little differently. My nurse practitioner helps me with new patients — with integrating data — we do a combined visit. Then the patients are comfortable seeing her usually for phone issues, and then I tend to see and we tag team. But our practice is one where we rarely get into the…you’re tracked into the nurse practitioner-only pool.
That being said, there are some nurse practitioners out there who are probably better than most of the cardiologists in the clinic. Be careful what you wish for. I had one other thought there; it dropped out of mind.
Mellanie: Okay, well, it may come back to you. So we have time for one more question, and so, let’s turn it to Paula.
Paula: Hi. My question is kind of patient/doctor. I had an ablation back five years ago. I love my EP. I’m from a smaller town in Michigan where there are two choices. The first person I went to see, I didn’t care for, so I went to see the second one and had an immediate connection. I feel very comfortable with the care I’ve gotten. But I’m getting a lot of flack from people because I’ve started to have problems again and probably will end up with a second ablation. And everyone is, “Oh, don’t go back to that same doctor.”
And I want to know what the importance is of going somewhere else because I have a relationship with him and I trust him. I also knew that there was a strong possibility that it might have to be redone. So what do you look for? I know he’s performed a lot in my town, but not as much as larger metropolitan areas.
Dr. Kowal: So that is a dilemma because as I said, this is a lifelong problem. To use an analogy; if you had coronary disease and you got a stent, you wouldn’t ever think that, “I’d never need a stent again.” So even though there are different gradations of quality of people doing interventional coronary work, I think we need to think of afib more like coronary disease. It is likely to come back. You’ve probably got an X number of years out of that ablation and so, there are a variety of issues.
Is it back because your doctor didn’t do a good enough job because you could have had a better doctor? Or is it back because this is the natural history of the disease process that he effectively delayed it further? And that’s a hard one. And you know what? My guess is if your relationship with him is such just reading it, that if you said, “Hey, you know, I feel really comfortable with you, I’d like to do this again with you. Do you feel comfortable, or am I a case you need to send to an Andrea Natale (who’s going to be up on stage later)?” I think you’ll get a good response from him.
Paula: He’s already said “Let’s do it.”
Dr. Kowal: Yeah, so…
Paula: So I just need to turn off? Everybody else is trying to tell me what to do.
Dr. Kowal: You know, the other thing is in Michigan, there are good, high-volume places. There are pros and cons to all those things that are hard to manage. When I feel like I’ve got a case that is tough, I tend to offer going to one of a handful of people around the country.
But if you’ve had that conversation…it sounds like the read on how you feel with them is that this person would be pretty honest if they felt they couldn’t deal with it.