The thing is: I am a real fan of ICDs. I could fill this blog with ‘good’ ICD stories. These would be vignettes that describe real people who have gained beautiful years of life because of an automatically delivered shock from a device that a former paper boy implanted.
Like all things therapeutic, there are the downsides. Excluding their high cost, ICDs harbor two biggies:
- ICDs only work in a narrow swath of patients that are sick enough to be at risk of cardiac arrest but well enough to not die of something else. Patient selection is key. And it isn’t easy. Smart people, including payers, argue about which patients benefit from the ICD.
- ICDs have serious risks: surgical complications, infections in the bloodstream, inappropriate shocks, hardware recalls and the most tragic of all, trading a painless quick death to one that’s not.
If a doctor is not careful, let’s say nuanced, ICDs can accomplish one of the outcomes I fear most: They can make a person worse. They can do harm. I loath making a patient worse with one of my treatments. It nearly fibrillates my atria.
This is why it is so important to have frank and open discussions with patients. They need to know that neither the device nor doctor are flawless.
You would think pre-ICD discussions would be routine and obvious. But they are not. For a number of reasons: First, neither doctors nor patients like talking about death. Second, heart doctors are ingrained with an ethos that considers death a failure of therapy. As such, many heart doctors take the view that preventing death is more important than considering a patient’s preference. Finally, many heart doctors do not consider ICDs (or the many pills they prescribe) a burden to patients.
These factors have led to the idea that implanting an ICD does not lend itself to shared-decision making.
I disagree with that idea.
And of course I wrote about it over at Trials and Fibrillations on theHeart.org
JMM
h/t to Chris Kaiser over at MedPageToday. Chris is a friend and an excellent medical journalist. He alerted me to the Archives of an Internal Medicine Paper that stimulated my thinking about this matter. His article, with a quote from me, is at MedPageToday. Â Thanks for your support, Chris.
2 replies on “New Trials and Fibrillations Post: ICD decison-making…Whose decision is it?”
Thank you for reaffirming my decision to not get an ICD. SCA beats cancer any way you look at it.
I’m guessing that the vast majority of these aggressive implanters do not obtain actual informed consent. The risk of developing serious tricuspid regurgitation and hence right-sided heart failure appears to be even greater for ICD implantees than for pacemaker recipients,who are almost never told the truth upfront, if ever. There are already thousands of people out there who have or will have significant dysfunction from valve damage caused by their ICD wires, representing thousands of potential legal cases against these EPs who thought that patient preferences mattered “very little or not at all.” As soon as the malpractice attorneys catch on to this issue and start reading over the informed consent forms to see what these people were and weren’t warned about, the ICDs-for-all approach will change with amazing speed.