“There are two things we are sure of, death and taxes. Now, if only we can get them in that order.”—Joey Adams
“If Einstein couldn’t beat death, what chance have I got? Practically none.”—-Mel Brooks
Q: “What’s the definition of minor surgery? A: An operation performed on someone else.”
As a follow-up of my blog yesterday, discussing why patients with implantable defibrillators should have access to their device’s data, I am going to talk about what your physician looks for when a device is interrogated. Many times this happens in silence or with few words, and some pushes of a button, when done in the office, and when done with remote patient management, is accomplished either automatically or with the patient pressing a transmission button. Lengthy discussions or explanations are the exception and not the rule for most practices. And the paucity of verbal exchanges in association with the defibrillator interrogation creates anxiety in addition to not being accompanied by in many instances a discussion about clinical aspects of care: symptoms, the emotional components of being an ICD patient who anticipates or who has experienced device therapy, or a partner wondering about sexual activity.
What the ICD does NOT tell your provider:
- What you were doing when you had an arrhythmia.
- The status of your arteries or heart pumping function.
- What medications you did or did not take.
- Whether you are smoking or eating at McDonald’s.
- Your quality of life.
Old model ICDs told us that you received a shock or didn’t, and whether your battery was dead or not. Newer ones act as lifelong monitors, not only of heart rhythm, but of the functional status of the device itself, the leads or wires, and the connection between them. If an arrhythmia called atrial fibrillation is detected and is prolonged, it might signal, even though it was not felt, that there is an increased risk of stroke, for which a recommendation might be made to start therapy with a blood thinning medication.
It is important to discuss at the time of your device interrogation, regardless of the process in which it is performed, any symptoms experienced even if they do not seem important or severe. A constant dialogue person to person is never substituted by technological exchanges of data. Medications might need to be adjusted to address issues of rhythm problems or other aspects of heart disease.
One issue which creates anxiety is the one regarding an ICD or wire which is under FDA advisory or recall. A recall does not imply the device and/or lead problem requires surgery, and in most instances, this is the case. If a device or lead is under an FDA advisory, there are very sophisticated computer formulas which are in place in the system which might detect problems very early. An advisory does not mean all the devices or leads of that model have a problem, just that the incidence is increased. Do not be afraid to ask your physician any questions regarding an advisory or recall.
Another discussion which needs to take place is what to do in an elderly patient when a terminal or complex illness is diagnosed (dementia, severe cancer, etc). An ICD is a device usually implanted to prolong life. Therefore, it must be addressed if end of life directives are discussed as well. It is possible to program the defibrillator portion of the device off and leave the pacemaker portion if that is wished. There are professional guidelines available to providers about this very issue.
One thing I always emphasize is that on the other side of an ICD is a patient. That is the focal point of care. We do not treat devices, we treat patients. The technology is but one tool we use, and not the thread that holds the doctor-patient relationship together.
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So can we all sign up? For your interrogations, that is? Heck, my entire “conversation” at an interrogation consists of wangling a full copy of my interrogation report from the tech, who always seems suspicious of my motives (“you want this for another provider? no? your own records? what do you mean your own records?” etc). My EP seems like a nice person and competent provider, but I get that as a real quick glimpse once a year, as he scrolls down the electronic chart, talks real fast, and flees — I haven’t had eye contact, let alone the chance to ask a question, in years. If he stopped, looked me in the eye, and asked me how I’m doing, I’d have a shock all right — BOOM. The current situation (the technology requires the provider’s time, & the person is adjunct) is why, I believe, the ICD user community online (and offline) is so engaged and active and necessary.
Great to know that some docs are getting on board as well! So, good on ya, mate, good points, and good attitude.
Casey, I recently left practicing medicine to work on bettering the lot for more patients in endeavors far more reaching. One is to have patients to obtain their data. Work is underway and it will become a reality. In the meantime I would recommend having a sincere conversation with your EP. I’m sure it might help. If this is not successful, there are many who are patient advocates and would welcome an engaged patient like yourself. Good luck and thanks for speaking for others.