Friday, June 18, 2010

On becoming empowered, educated and engaged.

I was recently asked to elaborate on some practical advice on how ICD patients can become more empowered, educated and engaged in their own care. The context of the discussion was surrounding the different ICD brands existent currently on the market and whether or not patients should partake in the conversation regarding brand.

So, here are some tips.

Today’s health care system has taken much of the control away from patients (and from doctors too). So, as patients—in order to get some of that control back—we must start taking responsibility for our health in ways that we haven’t had to do in the past. We must stay vigilant every step of the way, making sure that we’re receiving good (and safe) medical care.


Be wise. Learn as much as you can about the chronic condition that led you to have the ICD or CRT-D. Know and understand your risks and learn how to voice your wishes with confidence and authority. Be a strong advocate for yourself.


In order to have an intelligent discussion with your doctor about ICD therapy, you must have a good grasp of the topic at hand. Sure, if you’re like me, you’re probably not going back to school to become an electrophysiologist. But the more you know about ICDs and your condition in particular, the better you are at having a productive conversation with the doctor.

Also, learn all you can about device therapy and form your own opinions on what’s best for you. Discuss your options with your doctor and participate in the decisions about your device. Ask lots of questions, pick your doctor’s brain and use your doctor as an expert partner (or consultant) as opposed to someone who makes all the decisions for you.

I communicate with my doctor as I do with my financial advisor. He advises me on what he thinks is the best course of action, but bottom line is, (with apologies to our former president), “I’m the decider.”

It’s important to be completely at ease with your doctor. If he or she doesn’t like it when you ask questions, doesn’t listen to you, or is unwilling to spend the time it takes to explain things in terms you understand, fire the doctor and get one who will.

Lastly, whenever you go in for a device interrogation, ask for a copy of your report, bring it home with you and look it over. This is a great way to learn about your device and settings, to fuel your curiosity and help you learn.


The Society for Participatory Medicine (of which I am a member), defines this growing trend as “a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.”

In this context, a discussion about device configuration, settings, percentage of pacing, leads and even device brands, is perfectly acceptable and expected.

About ICD brands:

Doctors talk about device brands with vendors all the time. Manufacturers constantly pitch doctors about the superiority of their brands, including battery technology, lead reliability, device longevity and charge times.

I am a strong believer that patients should be privy to all this valuable information, too.

Bottom line: All devices can be pretty much programmed to deliver the best therapy for you. So, it might not be about asking for this brand or that brand but really about having an open conversation with the doctor. This is about access to information and participation in all aspects of your care.

Plain and simple, it’s all about the exercise of true informed consent.

(Book featured in the photo: Cardiac Pacing, Defibrillation and Resynchronization: A Clinical Approach. Yes, I have it. It’s fantastic!)

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