The purpose of this post is to clarify important issues about cardiac devices as they relate to deactivation. As I wrote yesterday, Paula Span of the NY Times covered this important issue earlier this week. Her coverage came about because of this Mayo Clinic paper published in JAMA-IM, which showed most patients with cardiac devices approach end of life without proper preparation.
The first two questions to clarify are: What is a cardiac device and what does it mean to deactivate it? When we say “cardiac device” we are referring to either an Internal Cardiac Defibrillator (ICD) or a pacemaker. There are many important differences; I will discuss the ones pertaining to deactivation later.
In the real world, the overwhelming majority of requests for deactivation (my guess is 999/1000) are to turn off ICD shocks. Recall that an ICD serves two main functions: 1) it senses then treats dangerously fast rhythms with either painless overdrive pacing or (not painless) high-voltage shocks, and 2) all ICDs come with built-in pacing capability for slow heart rhythms. This differs from a pacemaker, which is used only to treat slow heart rates.
When a patient with an ICD approaches end of life, it is appropriate to deactivate shocks. This is because shocks are painful and often anxiety provoking. What’s more, and this is too often forgotten, a shock for sudden cardiac arrest prevents the kind of death most people hope for–a painless, quick and peaceful death. A good death.
The critical point here is that deactivating shocks on an ICD has no immediate effect for the patient. None. Consider that most terminal patients request to be DNR (do not resuscitate) or AND (allow natural death). All we are doing by deactivating shocks is complying with a patient’s wishes. I like to explain to patients that not having shocks programmed on makes you like me–or anybody else without an ICD.
There is an immense difference between turning off ICD shocks and turning off a pacemaker. Cardiac pacing, unlike ICD shocks, does not burden the dying patient. Most patients cannot feel the difference between a paced heart beat and a native heart beat. In fact, many patients with pacemakers do not depend on their device. They have their own native heart beat. There are, however, patients who depend on their pacemakers. These “pacemaker-dependent” patients have either no underlying native heart beat, or they have an inadequate rate. When a pacemaker is turned off in a dependent patient, death comes quickly–but not always immediately, sometimes over hours to days. (The heart is amazing that way. It’s equipped with escape rhythms, and rarely does it just stop stone cold.)
I mention the issue of pacing because the Mayo Clinic researchers reported in their series that six pacemaker-dependent patients requested deactivation. This very unusual finding was unfortunate–in that it distracts us from the more common matter of ICD shock deactivation. I call it unfortunate and distracting for two reasons: One is that pacemaker deactivation requests are rare. In my 18 years, I’ve never been asked to turn off a pacemaker in a dependent patient. Yesterday, a device rep with 30 years experience told me he has never had that request either. My wife is a hospice physician. She has had it come up only twice, and both times she was able to convince the family that the pacemaker was not prolonging death.
The other reason this finding was distracting is that it adds ethical controversy that needs not be there: Whereas nothing happens when ICD shocks are deactivated, death comes soon after turning off pacing in a dependent patient. That confuses people. It makes both doctors and patients think pacemaker deactivation is euthanasia or physician-assisted suicide (PAS). It is neither.
Here is my reasoning:
- As human beings, patients are free and equal.
- They have a right of self-determination–a tenet consistent with all major religions.
- We also assume patients (or their surrogates) are making an informed decision.
- A pacemaker is a battery-driven form of life support. It belongs to the patient, not us. In this way, a pacemaker is like mechanical ventilation or renal dialysis. Though inside the body, the pacemaker is extra, unlike say a heart valve that has been endothelialized (grown into the body), and would take extraordinary measures to remove.
- No one would argue that a patient be forced to have a pacemaker implanted in the first place. We don’t tie patients down for surgery.
- In the same way, then, we mustn’t force a patient to keep his pacemaker functioning against his or her wishes. And it doesn’t require surgery to stop the pacemaker; it can be switched off easily using a programming device in the room (wirelessly). That fact bothers some of those who oppose the notion of pacing deactivation. I respectfully disagree. I see pacing as external, like a respirator or dialysis, which no one argues can be stopped if a patient no longer wants it.
The major issue with cardiac devices in terminally ill patients are ICD shocks. We should not let the rare case of pacemaker deactivation distract us from the issue of dealing with ICD shock deactivation.
ICDs are high-voltage delivery machines. They are no small hammer. The findings from Mayo Clinic, likely a best-case scenario, should serve as a wake-up call for patients and caregivers alike. For doctors, educating ICD patients about deactivation should be as important as explaining any other aspect of the device. For patients, in the current medical climate, where death is too often treated as optional, being prepared for the inevitable has never been more important.
HRS Expert Consensus Statement on the Management of Cardiovascular Implantable Electronic Devices (CIEDs) in patients nearing end of life or requesting withdrawal of therapy. http://www.heartrhythmjournal.com/article/S1547-5271%2810%2900408-X/fulltext
Doctor Wes Fisher writes poignantly about a patient in which he deactivated a pacemaker. Here: http://drwes.blogspot.com/2011/12/al-fine.html
4 replies on “ICD and Pacemaker deactivation: It is neither physician-assisted suicide nor euthanasia”
The decision to allow my ICD was that in the event I contract a terminal illness that it be turned off. The EP looked almost shocked that I would demand such a thing. Then he scoffed at the idea that I may contact another one or that my cancer may return at some point. I reminded him that I’d already been told that what I had was potentially fatal a number of times and that SCA beats the hell out of cancer. I wonder if he will actually deactivate it.
The same bunch who gave my husband an unnecessary, incompetently installed pacemaker tried hard to coerce him into submitting to an ICD that, we later learned, was explicitly not recommended by guidelines. In the first session of verbal abuse, my husband expressed the concern that he might someday be shocked when he did not want it, and the electro demanded, in a loud voice full of astonished contempt: “WHY would you EVER not want to be deFIBrillated?” I was stunned and appalled by such deliberate ignorance. Any bet on whether that guy talks about deactivation with his patients?
I agree that the pacemaker issue is distracting from the much more common and important message around ICDs.
Thank you for this. I would argue that the issue of pacemaker deactivation is in no way ‘distracting’, and is, in fact, essential to the discussion of patient rights and physician responsibility to determine when technology no longer meets an individuals goals. The very struggle against consideration of pacemaker deactivation demonstrates the reality that physicians do not understand the points you delineated so well in your reasoning. While this may be infrequent now – I do believe it will increase in the future and should be an active part of the dialogue that makes the entire discussion richer. (Medical Director Palliative Care)