Years ago at the time of the original cardiac defibrillator implant (ICD), he was a vibrant active man who had suffered from an arrhythmia related to scar from a remote heart attack.
Things change. Life has chapters.
It is amazing what can happen to a person during the 5-7 year battery life of an ICD. In this case, I watched him gradually deteriorate over the years. A series of small strokes, mental decline, plus compression fractures of the vertebra results in a scooter chair existence in the nursing home. Additionally, medical problems like worsening of kidney function, pneumonias and congestive heart failure episodes all confer a lifespan measured in months.
Sadly, his little box with a blinking light in the single room at the nursing home tells us his ICD has reached ERI –elective replacement indicator or low battery. Although his ICD pacing rate is low, he still paces a lot. This low heart rate indicates a need for pacing support, so not changing his device at all is not a viable option.
The cath lab staff call this a “downgrade” of an ICD to a pacemaker, implying that because an ICD can deliver a 750 volt shock in the event of a malignant arrhythmia it is a better device–like trading in a Lexus for a Chevy. Yes, of course the word downgrade should be corrected, but the more important concept here is the inherent misconceptions of ICD therapy.
Patients with ICDs, or CRT-Ds, who at the time of generator change have sustained significant life limiting co-morbidities, no longer glean any significant benefit from these high voltage devices. Moreover, in these severely ill patients, an ICD may painfully prevent the peaceful, and merciful death that is ventricular fibrillation.
At the time of ICD generator change, we must remember the Kaplan-Meir curves of the ICD trials; which show statistical mortality benefits only for patients who can survive multiple years after implant. That the science supports us in these cases is a good thing, as it allows us to use words I often speak: “Sir, an ICD will no longer help you.” But even if one did not know these data, it would be obvious upon seeing a patient before surgery whether continued ICD therapy is still appropriate. Things change, and so should our medical decisions.
These modern times of amazing therapeutic technology have resulted in patients living longer. This enhanced chronological longevity makes it seemingly impossible to die of old age anymore. Due to sudden death prevention an ICD patient is even more likely to live long enough to acquire much comorbidity, and when their battery needs changing, they will need an electrophysiolgist with both good hands and good sense.
Yes, it is true that sharing life with a palliative care doctor helps me understand these issues.
Let’s not call a decision to discontinue ICD therapy a downgrade. Like stopping a medicine that is no longer indicated, we should not think we downgraded care, but rather enhanced it.
JMM
One reply on “What to do when a chronically ill patient reaches the end of battery life of their cardiac defibrillator…”
This is a wonderful article written with a great deal of empathy and I feel moved to write and say thank you. I will show it to my family as well as my cardiologist. The situation you write about is different to my own, however, I feel it will help many doctors, patients and carers. I have had immense difficulty convincing my own cardiologist to switch off my ICD. I was diagnosed almost 2 years ago with dilated cardiomyopathy and was rushed to hospital after collapsing and suffering breathlessness. Imagine my horror when I was told that I had CHF; I was 46 at the time! Just when I thought it couldn't get any worse, the diagnosis of dilated cardiomyopathy was established and I had surgery 17 months ago to have a 3-lead biventricular cardioverter defibrillator implanted. This was done as I had many episodes of syncope following VT, EF was 21%. I have always been very health conscious and never suffered from any serious illness. My cardiologist wants to have me assessed by a clinical psychologist and I respect his reasons for this and this demonstrates how caring he is, however, I am neither insane nor am I suicidal and my reasons for wanting to have my ICD switched off are made after educated and well-informed choices. I feel my device no longer serves the purpose it is intended for since it has me in a state of constant fear of being shocked (it is very painful). One statement in this article; "an ICD may painfully prevent the peaceful, and merciful death that is ventricular fibrillation" spoke volumes to me because this is exactly how I personally feel. I realise that if my device is switched off it is very likely that I will die shortly afterwards but I would rather be left to die naturally from a condition that is well established, than to be forced to live with a device inside of me which no longer offers me peace of mind but frightens me. I want to show my cardiologist this article to help convince him although I understand if I were 78 and not 48, it would be easier for him to accept.
Your article is based on a patient who is already in the end of life stage and the reasons not to replace the pacemaker are kind and logical. My own case is slightly different but in essence the same. Physicians that do not replace devices or agree to de-activating them should not be viewed upon as uncaring, quite the contrary. I will require a great deal of care sooner rather than later. I do not want to live with a device inside me that fills me with dread or will not allow me to slip away peacefully by trying to shock me when my heart is not able to continue functioning.