Putting a Focus on Patient Education: Interview with Dr. Jeffrey L. Williams

Jeffrey L. Williams, MD, MS, FACC, FHRS, CPE is the Co-Director of the Heart Rhythm Center and Assistant Quality and Medical Informatics Officer at Lakeland Regional Health System in Lakeland, Florida. He recently published his third book, entitled What Are Palpitations?, contributes to a regular blog (www.heart-rhythm-center.com), and has a series of podcasts on iTunes for patient education. In this article, he discusses his ongoing projects in EP. 

We talked with you back in September 2013 about your first book, What is a Pacemaker?. You have since published two more books. What inspired you to continue writing?

I received such good reception from my patients with my first book, that there was a natural progression to continue onto the topic of defibrillators, publishing What is a Defibrillator? in 2015. Interestingly, it’s especially relevant and timely now, due to the shared decision-making mandate from Medicare. The defibrillator book encompasses all that is required in terms of an evidence-based, shared decision-making tool. I’m glad I put the work into writing it, because it’s a great tool for that shared decision-making process.

Do you have further books planned?

Not at this time. I think this book series encompassed the three major pillars of electrophysiology practice: pacemakers, defibrillators, and heart rhythm abnormalities. I am looking into the possibility of having the books translated into Spanish as well as into audiobook format to see how they are received.

Who are the books intended for — patients only, or anyone new to cardiac EP as well?

The books are mainly geared toward patients and their families. However, for a non-electrophysiologist or non-cardiologist, I think the books can be useful by describing everything that is done when we’re working up someone for a pacemaker or defibrillator or a heart rhythm abnormality. For example, a primary care provider that is years out of training might find the information on indications and complications for device implantation to be useful. Some chapters are a little more complex than others, so it can be helpful to have a medical background to understand terms such as pneumothorax, perforations, and complication rates as percentages, etc. A friend of mine who is not in medicine told me the book content was complex and that I should consider “dumbing it down”. However, that is the exact opposite reason why I wrote the books. As patients are getting more sophisticated, they’re not happy with hearing, “you have a heart rhythm problem and you’re going to need a pacemaker. I’ll see you in the hospital next Tuesday.” They want to know what they can do and have lots of questions. Is there anything that can be done to non-invasively treat the disorder? Do they absolutely need to have a device implanted? What are the risks of the device? What are the benefits? I wanted the books to offer everything there is to know for patients and their family members.

How are the books made available to your patients?

I give the books for free to patients, including the ones in the hospital. They’re like an extended, really thick business card! The books are also available for purchase on Amazon. 

What are some of the common concerns or questions that you still often hear from your EP patients?

One of the common concerns is the risk for pacemaker implantation in very elderly patients. I often have long discussions with them about the other comorbidities. There are 70-year-olds that I consider too fragile or high risk to undergo pacemaker implantation, and there are 102-year-olds with no medical conditions whatsoever other than presenting for the first time to a hospital in their whole life with complete heart block. If that patient is extremely elderly, what are the risks? When I first started in practice, I thought this was a reasonable question. I didn’t have a great answer for patients, and neither did the literature, in terms of the complication rates for extremely elderly patients undergoing pacemaker implantation. If you look at studies going back 30 years, no one really looked at that extremely elderly population and what the risks were for device implantation. When I started out in private practice in 2008, I looked consecutively at 150 patients all greater than 80 years of age. Out of 149 patients, with the average age being 86.5, I found a 2.7% rate of major complications and a 2.7% rate of minor complications within 30 days of implantation. Interestingly enough, two of the major complications were significant strokes in elderly females in whom I had stopped their warfarin to do the implant, and 7-10 days after the implant, they both presented with strokes. That was around 2009-2010 when the data were just being established in terms of the safety of continuing warfarin uninterrupted. Looking at my own patient outcomes was helpful for being able to explain the risks to patients. It also helped me change my practice pattern to what I think is now safer. Since about 2010, I have not held warfarin for a device implant, and fortunately, have not had any perioperative strokes.

Tell us about how the podcasts came about. 

The vast majority of patients with pacemakers or defibrillators are between 60 and 90 years old; however, the range of patients I treat in my practice for palpitations and heart rhythm disorders is between 20 and 60 years of age. Personally, I hadn’t listened to too many podcasts, but in talking with younger friends and family, I found that about 20-30% of the population aged 20 to 40 listens to podcasts on a regular basis. I wanted to get information out to this demographic, so it was sort of an experiment on my part to see if the podcasts would be well received. I’ve found that it’s not easy to track the metrics on how many people are listening; iTunes provides a popularity bar, but it’s unclear what that really means. My goal is simply to get the information out there, and the podcasts are all free. It’s somewhat difficult to talk about arrhythmias in an audio format only, because you can’t show figures or tracings. However, the books give people the option of diving in with a little more detail, with figures and illustrations to further clarify issues. 

What time commitment and preparation is required with podcasts? 

I worked with an online firm based in the UK to do the intro, outro, and disclaimer. Each episode takes anywhere from 2 to 4 hours to put together; this includes the recording, editing, filtering out noises and pauses, etc. The process gets quicker as you do more of them. 

Are the topics that you’ve covered so far primarily from the book chapters?

Yes, the topics broadly parallel the chapters in the What Are Palpitations? book. I would like to do a similar line of topics for pacemakers and defibrillators, as well as explore other topics if requested through the blog. 

Why is it important to focus on patient education?

An example where I see a lack of education is when a 90-year-old comes to me with a biventricular ICD that is at the elected replacement indicator. I’ll ask the patient if they’d still like to be protected from sudden cardiac death, or if they’d like resynchronization therapy but also the ability to have a peaceful sudden cardiac death; most patients tell me they didn’t know they had the option! There is also a lack of education with atrial fibrillation; patients with no symptoms from atrial fibrillation often ask me if they should get an ablation. I believe getting the information out there is important. However, with only 30-45 minutes in an office visit, what is the best way to talk to patients about atrial fibrillation and have them fully understand the risk of stroke, their anticoagulation options, and non-invasive (e.g., diet, lifestyle, weight loss, blood pressure control, tobacco cessation) means for managing and preventing atrial fibrillation? If they are interested in undergoing an invasive procedure, how do you counsel them on the success rates and complication rates, etc.? I don’t know how my colleagues do this in such a limited time frame. Even 6 visits later, patents still can come to me with questions about atrial fibrillation. That is the reason for the books and podcasts; it allows us to have that open dialogue about their care. To me, patient education equals patient engagement. When you empower patients to take control over their illness, they tend to do better. 

What type of feedback have you received thus far?

My patients love the books. They are the reason I continued on with publishing the second and third books. They enjoy seeing some of my personality come through in the writing, and some of things that I say to patients are reflected in the book. I’ll often joke with my patients when I give them a book and tell them I’m going to quiz them the next time I see them, to test whether they are reading the book. I also use the book as a way to explain the disease process to my patients and their families, drawing on the pictures in the book to describe what we’re going to be doing or what we’ve done. They can then go back and review the information again later. I’ve also had some positive reviews on Amazon, so that has been gratifying. 

What’s next for you?

The main thing will be to get the podcasts completed for all the other topics that are included in the book, and converted into audio format for Amazon and Audible. Close to 50% of all book sales worldwide are on Amazon, so I think that is the best platform to get the information out there!