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: