What should families know about ICDs and Pacemakers?

There are several different scenarios when it comes to ICDs and Pacemakers. The simplest scenario is the child who’s had a cardiac arrest due to unambiguous disease, where the risk is that they’re going to have another cardiac arrest. For those families, we celebrate their neurologic recoveries when that’s going along well, and outline the disease and say, “There’s one thing we’ve got to do, we’ve got to put in this device, we hate the device—there’s about a 50% chance you’ll never use it, there’s about a 20% chance the device does something bad to you, and a 20% chance the device does something really good for you, and then in between is in between.” We make sure they’re aware of what the score is. But for those families, the peace of mind the device gives them is so substantial that they are able to view it as a good thing most days. And even when it’s less clear in that patient that you need a device, they’re often quite resistant to abandoning ICD therapy. When it’s symptomatic heart block, it’s even easier because the procedure is less toxic, the device is substantially less toxic and it will make them feel better. So that part’s relatively straightforward, if you will.

For those with heart block, if you’re not symptomatic, we virtually always have 6 months to years to figure out when the time is right. It’s a constant discussion and mostly the family is ready for you to say, “Yes it’s time” when it comes time. The discussion is a lot of education about why we’re putting it in and what we think the payoffs are going to be. These are really 3 to 5 year discussions or longer.

The hardest defibrillators are the ones that we do because we’re worried. And we have a vignette in every direction. One thing is that among cardiologists, we’ve had a pendulum swing from a lot of enthusiasm to less enthusiasm about those devices. It takes more to make us get worried now than it did 15 years ago. Partly because the devices break more than we thought they were going to break.

So we want people to know that there’s a cost to therapy. When we do ablations, we constantly remind people that this is a risk-benefit choice. There’s an advantage to doing something, and there’s an advantage to doing nothing. There’s a cost to doing something, and there’s a cost to doing nothing. If you communicate that effectively to families, I think they’re more tolerant of the complications that can ensue and they’re more tolerant of the fact that procedures don’t always work. We try to do the best we can and be brutally honest about what our success rates are and make those rates as good as we can make them. But we simply don’t tell people, “There’s never a problem; this is 100% successful.” That partnership is what allows them to make decisions. A lot of times, the counseling for the procedure takes more time than the procedure.

-Mark Alexander, MD, pediatric and adult cardiologist and electrophysiologist