Management of cardiac implantable electronic devices in patients receiving palliative care

INTRODUCTION — 

For patients receiving palliative care, deactivation of cardiac implantable electronic devices (CIEDs), including permanent pacemakers (PPMs) and implantable cardioverter-defibrillators (ICDs), may be in alignment with their goals of care. The rationale for CIED deactivation and practical guidance about the process will be discussed here. A more extensive discussion of palliative care, including ethical issues that may arise, is presented separately.

●(See "Palliative care: The last hours and days of life".)

●(See "Overview of comprehensive patient assessment in palliative care".)

●(See "Ethical issues in palliative care".)

RATIONALE FOR CIED DEACTIVATION — 

Cardiac implantable electronic devices (CIEDs) include permanent pacemakers (PPMs) and implantable cardioverter defibrillators (ICDs). PPMs treat bradyarrhythmias by delivering low-energy impulses to the right atrium and/or right ventricle. ICDs treat ventricular arrhythmias with antitachycardia therapy, of which there are two types: shocks and antitachycardia pacing (ie, termination of a ventricular arrhythmia using rapid pacing). In addition to delivering antitachycardia therapy, transvenous ICDs can function as pacemakers to treat bradyarrhythmias.

CIED devices can be deactivated by reprogramming. The most common reason for CIED deactivation is a change in a patient’s goals of care due to advanced illness. Potential benefits of CIED deactivation include the following:

●Reducing pain or anxiety – Shocks delivered by ICDs are often described as a “sudden kick in the chest” and can be painful. The presence of an ICD can lead to anxiety and, in those who have had a shock, post-traumatic stress disorder [1,2]. For these reasons, patients with an ICD who are nearing the end of life may wish to have their ICD reprogrammed to turn off antitachycardia therapy, alleviating anxiety and preventing painful shocks from occurring.

ICD shocks are common near the end of life, even for patients who have never received a shock before. In studies of patients with ICDs, shocks occurred in 27 percent of patients during the final month of life and in 12 to 31 percent during the final 24 hours of life [3-5].

●Ending life-prolonging measures – Patients with a CIED may wish to deactivate their devices to end life-prolonging measures; for some patients (eg, those who are pacemaker-dependent), this will permit the patient a degree of control over the mode and timing of their death. Pacing and/or antitachycardia functions may be deactivated:

•Pacing – For many patients with an ICD or PPM who are pacemaker-dependent (ie, patients with profound underlying bradycardia who require pacing to survive), deactivating the pacing function of the device may lead to death within minutes or hours; for some of these patients, a rapid, relatively painless death may be preferable to a prolonged, uncomfortable one. For patients who are not pacemaker-dependent (eg, patients whose device was placed because of chronotropic incompetence, which is an inadequate heart rate response to activity), deactivating the pacing function may have little or no impact on their prognosis or quality of life.

•Antitachycardia therapy (shocking and antitachycardia pacing) – For patients with an ICD, deactivating tachycardia therapy will prevent shocks and antitachycardia pacing from intervening if ventricular arrhythmias occur. In many cases, patients who are nearing the end of life may prefer to die suddenly and painlessly from a ventricular arrhythmia rather than experience a more prolonged death.

Occasionally, a patient receiving palliative care may require CIED explantation due to infection or malfunction of the generator and/or lead(s). This patient might choose to forego device replacement for the same reasons that a patient might choose to have a device deactivated.

UNDERUTILIZATION OF ADVANCE CARE PLANNING IN PATIENTS WITH CIEDS — 

Advance care planning (ACP) helps patients prepare for current and future decisions about their medical treatment. In advance care planning conversations, the clinician and patient discuss the patient’s current medical condition, prognosis, goals, values, and preferences. Advance care planning is discussed in detail elsewhere. (See "Advance care planning and advance directives" and "Discussing goals of care".)

For patients with cardiac implantable electronic devices (CIEDs), ACP should include a discussion about CIED management. This is particularly important for those with terminal illness. ACP conversations should address CIED functionality, the rationale for device deactivation, and what to expect after deactivation. Guidelines for these conversations are provided below. (See 'Counseling patients about CIED deactivation' below.)

Unfortunately, most ACP conversations and written advanced directives do not address CIED management [6-8]. In a prospective study of 51 patients with ICDs and significant medical comorbidities who were followed for up to 18 months, living wills were completed 88 percent of the time, but communication about ICD deactivation occurred only 23 percent of the time [9]. Involvement of a palliative care clinician may increase the likelihood of discussing CIED management; in one study, 68 percent of patients who had a palliative care consultation discussed device deactivation [10].

Many patients do not understand how their implantable cardioverter-defibrillator (ICD) might impact their comfort in an end-of-life situation and do not understand that device deactivation is an option [9-17]. Furthermore, many patients overestimate the role of their ICD in maintaining their health [18].

As a result of insufficient communication about CIED management, many terminally ill patients do not have their ICDs deactivated. In an analysis of ICDs that were explanted during autopsy, fewer than half of patients with an active do-not-resuscitate order had their ICD function turned off before they died [5]. Many patients with active ICDs experience shocks in the final days of their lives, potentially leading to unnecessary discomfort and anxiety [3-5].

ETHICAL AND LEGAL CONSIDERATIONS — 

Patients have the ethical and legal right to request discontinuation of cardiac implantable electronic device (CIED) therapies at any time [19,20]. This right extends to both antitachycardia therapies (ie, shocks and antitachycardia pacing) and pacing.

Deactivation of antitachycardia therapies is an example of withholding life-sustaining therapy, as is deactivation of pacing therapy for a patient who is not pacemaker-dependent. In contrast, for a patient who is pacemaker-dependent, deactivation of pacing is a withdrawal of therapy, similar to removing someone from mechanical ventilation. In many countries, including the United States and United Kingdom, there is no ethically meaningful distinction between withholding and withdrawing life-sustaining treatments.

Withdrawal of pacemaker therapy for a pacemaker-dependent patient is supported by the 2018 American College of Cardiology/American Heart Association/Heart Rhythm Society Guidelines, which state “Patients with decision-making capacity, or their legally defined surrogate, have the right to refuse or request withdrawal of pacemaker therapy, even if pacemaker-dependent” [21]. However, many cardiac electrophysiologists believe that discontinuing pacing therapy in a pacemaker-dependent patient is ethically and morally different than deactivating antitachycardia therapies [22], likely because withdrawal of pacing may result in death within minutes to hours. As a result, pacemaker-dependent patients with terminal illness are infrequently told that they may choose to discontinue pacing support, despite this being an acceptable option based on ethical principles.

A palliative care consultation may be helpful when there are divergent opinions among family members or between the patient/family and health care provider regarding CIED deactivation. In addition, if a clinician does not want to fulfill a pacemaker-dependent patient’s request to turn off pacing therapy, they should refer the patient to another clinician or, if none is available, request a consultation with a hospital ethics committee. Various professional society guidelines stipulate that clinicians in this position have an obligation to arrange for alternative provisions of care in cases of conscientious objection that cannot be resolved by ethics consultation [20,23,24].

A more extensive discussion of the ethical issues in palliative care and the distinction between withholding and withdrawing therapy are presented separately. (See "Ethical issues in palliative care" and "Withholding and withdrawing ventilatory support in adults in the intensive care unit".)

COUNSELING PATIENTS ABOUT CIED DEACTIVATION — 

The decision to deactivate a cardiac implantable electronic device (CIED) requires a discussion with the patient/family about the following details:

●Goals of care – The first step is to gain an understanding of the patient’s goals of care. For patients who are choosing to focus on comfort and quality of life rather than life-prolonging measures, CIED deactivation may be appropriate. Details about goals-of-care discussions can be found elsewhere. (See "Discussing goals of care".)

●CIED functionality and deactivation – In order for patients to make an informed decision about CIED deactivation, they must understand the following concepts:

•The functionality of their specific CIED (ie, pacing, antitachycardia therapy, or both) and whether they are pacemaker-dependent.

•The rationale for deactivating CIEDs. (See 'Rationale for CIED deactivation' above.)

•The process of deactivating CIEDs, including the fact that deactivation of a CIED is accomplished with a device programmer and is a painless process. (See 'How to deactivate a CIED' below.)

•For patients with a transvenous ICD, the fact that they can choose to continue pacing therapy even if antitachycardia therapy is deactivated.

•What to expect after deactivation of pacing or antitachycardia therapies, namely:

-Deactivation of pacing – For patients who are pacemaker-dependent, deactivation of pacing often leads to death within minutes or hours. However, sometimes these patients have an underlying escape rhythm that can sustain life for days or weeks. During this time, patients may have reduced quality of life due to syncope or lightheadedness.

For patients who are not pacemaker-dependent, device deactivation does not lead to immediate death. However, these patients should understand that they might experience exertional symptoms (eg, dyspnea, fatigue), syncope, or sudden death (due to severe bradycardia) at any time after device deactivation.

For patients who have deactivation of cardiac resynchronization therapy (ie, biventricular pacing), their underlying heart failure symptoms may worsen after withdrawal of pacing.

-Deactivation of antitachycardia therapy (shocks and antitachycardia pacing) – For patients with an implantable cardioverter-defibrillator (ICD), discontinuing antitachycardia therapies will place them at risk for syncope or sudden death at any time after device deactivation.

●Ethical issues – Patients and families may have questions about the ethics and legality of deactivating a CIED, particularly if a patient is pacemaker-dependent. They should be reassured that withdrawal of CIED therapies is ethically and legally sound. These issues are discussed in detail elsewhere in this topic. (See 'Ethical and legal considerations' above.)

●Arriving at a decision about CIED deactivation – The clinician should help the patient come to a decision that is in alignment with their goals. Patients should understand that if they have a device (eg, transvenous ICD) that can deliver both bradycardia and tachycardia therapies, they may choose to deactivate one or both functions.

PERFORMING CIED DEACTIVATION

Documentation — Before performing deactivation of a cardiac implantable electronic device (CIED), the clinician should document the details of their conversation with the patient and family in the medical chart. This documentation should include the reason for deactivating the device and the specific plan for deactivation (ie, how the device will be reprogrammed).

Where to perform deactivation — Because of the high likelihood of symptomatic bradycardia or death following pacemaker deactivation in a pacemaker-dependent patient, these patients should have their device deactivated in a health care environment (eg, hospital, nursing home) or at home with hospice care. Deactivation should not be performed in an ambulatory clinic because of the high likelihood of death soon afterward.

Since most non-pacemaker-dependent patients experience few, if any, immediate consequences following device deactivation, these patients can have their devices reprogrammed anywhere that is feasible for the patient and the clinician.

How to deactivate a CIED — Typically, the deactivation of a CIED is performed by a cardiologist or technologist who is trained in the management of CIEDs. Deactivation of pacing and antitachycardia therapies is accomplished in the following manner:

●Pacing – The process for deactivating pacing varies among devices. Most devices can be programmed to ODO mode (ie, sensing but no pacing). For those that do not have this mode, the lower rate limit and/or output energy level may be lowered so that the device is functionally "off."

●Antitachycardia therapies – For patients with an implantable cardioverter-defibrillator (ICD), antitachycardia therapies (ie, antitachycardia pacing, ICD shocks) can be disabled with the programmer. If a device programmer is unavailable, emergency deactivation of antitachycardia therapies can be accomplished for most devices by placing a magnet on the skin overlying the ICD generator. While the magnet is in place, the ICD will withhold antitachycardia therapy while continuing with pacing functions. If the magnet is removed, the antitachycardia therapy will be restored.

For patients with transvenous ICDs in whom pacemaker support remains consistent with the goals of care, pacing therapy can be maintained even when antitachycardia therapy is turned off.

ICD programming is discussed elsewhere. (See "Implantable cardioverter-defibrillators: Optimal programming".)

SUMMARY AND RECOMMENDATIONS

●General principles – For patients receiving palliative care, deactivation of cardiac implantable electronic devices (CIEDs), including permanent pacemakers (PPMs) and implantable cardioverter-defibrillators (ICDs), may be in alignment with their goals of care. Deactivation is performed by reprogramming. (See 'Introduction' above.)

●Rationale for CIED deactivation – Deactivation of antitachycardia therapy decreases the risk of painful shocks, may reduce anxiety, and increases the likelihood of sudden, painless death. For patients who are pacemaker-dependent, deactivation of pacing therapy usually leads to death within minutes or hours which, for some patients, may be a desirable outcome. (See 'Rationale for CIED deactivation' above.)

●Advance care planning – Deactivation of CIEDs should be discussed during advance care planning discussions. (See 'Underutilization of advance care planning in patients with CIEDs' above.)

●Ethical and legal considerations – Patients have the ethical and legal right to request deactivation of CIED therapies at any time. This right extends to both withholding of antitachycardia therapies and withdrawal of pacing in those who are pacemaker-dependent. (See 'Ethical and legal considerations' above.)

●Counseling about CIED deactivation – The decision to deactivate a CIED requires a discussion with the patient/family about the following details (see 'Counseling patients about CIED deactivation' above):

•Goals of care

•Rationale for deactivation

•What to expect after deactivation

•Ethical concerns (if any)

●Performing CIED deactivation – Before deactivation, the clinician should document the reason for deactivating the device and the specific plan in the medical chart. Because of the high likelihood of symptomatic bradycardia or death following pacemaker deactivation in a pacemaker-dependent patient, these patients should have their device deactivated in a health care environment (eg, hospital, nursing home) or at home with hospice care. Other patients may have deactivation performed in the ambulatory setting. Deactivation is performed as follows (see 'How to deactivate a CIED' above):

•Pacing – Most devices can be reprogrammed to ODO mode (ie, sensing but no pacing). For devices that do not have this mode, the lower rate limit and/or output energy level may be lowered so that the device is functionally "off."

•Antitachycardia therapies – For patients with an ICD, antitachycardia therapies (ie, antitachycardia pacing, ICD shocks) can be disabled with the programmer. If a device programmer is unavailable, emergency deactivation of antitachycardia therapies can be accomplished for most devices by placing a magnet on the skin overlying the ICD generator.

ACKNOWLEDGMENT — 

The UpToDate editorial staff acknowledges Ann Garlitski, MD, who contributed to earlier versions of this topic review.