The Internal Cardiac Defibrillator (ICD) can be a life-saving device. Many scientifically robust studies have demonstrated that when these machines are implanted in carefully selected patients, mortality is reduced. That is the upside–a big one for sure.
The downsides of these devices are many. Our ability to predict which patient will eventually need a shock for survival is terrible. This leads to a high NNT (or Numbers Needed to Treat). In other words, many ICD patients are exposed to the risk but get none of the benefits.
Another downside is that ICD shocks delivered in debilitated and chronically ill patients can prolong suffering and induce added pain at the end of life. This is a huge problem. Call it heart-breaking if you will. I hate this one.
The simple solution for ICD shocks at the end of life is to deactivate the ICD. The problem here is that many ICD patients don’t want their devices turned off, even when facing severe diseases.
A recent study from Yale, published in JAMA/Internal Medicine and covered on theHeart.org showed that patient education makes a huge difference in ICD deactivation. The study also showed that patients demonstrated poor understanding of the harms and benefits of the machine that inhabits their body.
This struck me as a wake up call to the electrophysiology community.
How can a patient share in the decision to have an ICD (or deactivate it in appropriate settings) if they can’t name a benefit or harm from the device? And of course patients will not want deactivation if they don’t understand the device’s mechanism of action.
We must do a better job educating our patients about such an invasive therapy.
I do not want the post to come off as doctor-bashing. I am not saying my patients would do any better on a pop-quiz. I, too, am trying to fit all the important stuff into an office visit. That’s a challenge.
What I hope will transpire in the future is that patients considered for ICD will have a better idea of what to expect from the device. For if patients are to share in the decision to implant and then deactivate, they must understand what the ICD can and cannot do.
Please feel free to comment on the post over at theHeart.org. Here is the link:
The next milestone in ICD therapy: Improving patient education
3 replies on “New post up over at theHeart.org — ICD deactivation and patient education”
This is a problem for many therapies, not just ICDs. If you view an ICD as a life-sustaining measure, you could add mechanical ventilation, code status, DNR orders and CMO issues to ICDs in the list of health decisions most people are not prepared to make with any kind of real informed consent. The rise of patient autonomy, while in some ways a good thing, often demands more of people than they are prepared to provide.
Appallingly, the first two comments on this story on MedPageToday were about how informing patients about the facts and their legal rights equals Nazi death panels. One hopes that these comments were not from actual doctors. Or that the alleged virtue of slow expensive death does not become enough of a political ingroup-recognition issue that the patients of conservative physicians need to start checking everything they’re told with Dr. Google.
Give your patients more literature – seriously.
After my first date with a fluttering chest, I spent the night at the hospital waiting for an EP to show up in the morning. I knew enough basic A&P to understand that I wasn’t in grave danger, but I didn’t know much else. Hey, I should have paid more attention to that PQRST stuff in college!
The very best thing I received that evening was a survey article about arrhythmia aimed at PCPs. It gave me something to do (read), it gave me information, and it gave me a solid introduction to treatment options.
The EP came by in the morning ready to do an EP study, possibly an ablation, with some warfarin thrown in for good measure. By the time we were done talking, we decided to do ….nothing…. (except pill in a pocket) for a while.
I’m sure that article, and the resulting conversation, changed the course of treatment. We’ve been doing nothing for 5 years and I’ve used the pill in the pocket 3-4 times. I know I’m probably headed for an ablation, but think about how much better ablations are then they were just 5 years ago.
Who gave me that article? Not a Doc, not a Nurse, no one who was tasked with caring for me that evening. It was a friend (who happened to work at the hospital) who knew my personality. His contribution was spot on and made a difference.
Ask you patients about the last thing they read. Unless they give you a blank stare (and thus aren’t active readers), give them something to read. Survey articles are great.