Correspondence Address:
Ms. Jo Ann LeQuang
Nema Research Inc., Naples, Florida
USA

Full Text

The purpose of implantable cardioverter-defibrillator (ICD) therapy is to rescue patients from potentially life-threatening episodes of arrhythmias. An ICD effectively terminates ventricular arrhythmias, protects against bradycardia, and can be combined with cardiac resynchronization therapy. However, the vast majority of ICD patients are elderly with advanced cardiac disease and comorbidities, with a short life expectancy. The dying process may lead to triggers for activation of the defibrillator function at a time when defibrillation has no potential to reverse death. Defibrillation is painful, and being defibrillated at the end of life is a distressing experience for both patients and their loved ones. It is therefore important to make patients their relatives, and their health-care professionals aware of the need to turn the ICD off at an appropriate time to avoid painful shocks at the end of life. The defibrillator function can be deactivated while allowing the continuing function of bradycardia and resynchronization parameters to remain the same as the voltage delivered by these functions is much lower than that required for defibrillation and is not perceptible to the patient. If a programmer and/or qualified device professionals is not available, a specific kind of “doughnut” magnet held over the device will deactivate the defibrillation function of all ICDs. Notably, the ICDs from the manufacturer Biotronik requires reactivation every 8 h by removing and placing the magnet again.

ICD shocks at or near end of life are far from rare. In a 2017 Italian study about a third of ICD, patients received a potentially painful and distressing shock in the last 24 h before death.[1] In a study of 65 deceased European ICD patients, the device remained active among 51% even though death was imminent and 24% of those patients received at least one shock in the last 24 h of life.[2] Up to a third of ICD patients with end-stage heart failure experience an ICD shock as they near death.[3] In some cases, it has been recognized that shocks delivered in the last hours of life may go unobserved and undocumented.[3]

Deactivating an ICD is legal, morally acceptable, and ethical when it is an informed choice.[3] Patients must be counseled as to what device deactivation means. This necessitates a shared decision-making model with the patient (if cognitively intact) and/or the family. Ideally, education should be provided before the device is implanted. It is important to advise patients about the possibility of deactivating the ICD even while the patient is in relatively good health and to tell their most frequent companions how to do the magnet application to stop defibrillation, as patients with cardiac conditions and comorbidities can deteriorate abruptly.

It is crucial that ICD patients understand that the defibrillator function of their device can be deactivated without having to intervene surgically and that they will not feel any different when the shock function is deactivated. It has been recommended that ICD deactivation discussions occur prior to initial implant (if possible) and then periodically thereafter to defuse the potentially sensitive nature of the topic.[4] The patient and family should understand the deactivating an ICD means that no rescue therapy is available for ventricular fibrillation cardiac arrest and that leaving it on means the device may deliver painful shocks that may prolong the process of dying. Patients and their families should also be informed that the decision to deactivate the device may be made (or changed) at any point in the course of care.

There still remain many barriers in the conversation about ICD deactivation. A great shortfall in the health-care systems is that these discussions are not mandatory or even routine. In fact, this topic is never addressed with many ICD patients, and the device is left active even if the patient might have deactivated the device had he/she knew it was possible. A study of 229 octogenarians and nonagenarians (mean age 82.0 ± 2.2 years) with an ICD were surveyed about their device therapy and 34% said they would like to keep the shock function active even if they had a terminal illness and researchers found about one-quarter of respondents had limited understanding of ICD function and the consequences of deactivating high-energy therapy.[5] In a study of 115 ICD patients (mean age 63 years), 71% said they had never discussed turning off shock therapy with their physician or what this might mean; in fact, 44% thought turning off the shock function was equivalent to euthanasia, and 43% said that if shock therapy was disabled, it could never been turned on again.[6] In a survey of sixty ICD patients (mean age 59 years, range 23–89), only 3% had ever discussed device de-activation with their physician, and most patients (85%) said they had never thought about turning off the shock function in the event of a terminal illness.[7] In a survey of 546 patients recruited from the Hypertrophic Cardiomyopathy Association (mean age 49.1 years), 45% of ICD patients in that group were unsure if deactivation of the ICD's shock function was tantamount to euthanasia or physician-assisted suicide, which suggests that the matter was never discussed with a clinician but was rather only the subject of speculation by the patient.[8] In a survey from the Heart Rhythm Society of 787 members and industry representatives, 92.4% had themselves personally de-activated an ICD in a terminally ill patient; it should be noted that in 56.7% of ICD cases where the device is deactivated, it is the manufacturer's representative who handles the actual deactivation.[9] Since cardiac disease is often a chronic condition with exacerbations and improvements, patients should have opportunity to periodically review ICD therapy as part of their overall treatment goals and Advance Care Planning. Many patients with cardiac disease overestimate their longevity and may appear unwilling to discuss end-of-life issues.[10]

Device deactivations have increased since 2007, likely due to greater efforts on the part of clinicians to bring up this difficult topic with their patients.[11] In a 2009 survey of 4,876 physicians, 77% thought that patients giving informed consent for an initial ICD implantation should be told about the possibility of turning off the device's shock capabilities.[12] From a retrospective study based on case-notes review of 44 ICD patients who were at the end of life, there was evidence that device deactivation was discussed in 52% (n = 23) of the patients.[13] Of this population, 74% (n = 17) opted to deactivate the device at a median interval of 7 days before death; thus, many patients are amenable to the idea of device deactivation.[13] However, in a small UK study, 7 of 13 patients who received specific counseling accepted device defibrillator function deactivation, and none received a shock in the final month of life.[14]

This further suggests that perhaps more ICD patients approaching the end of life would deactivate the shock function of their devices if they knew it was an option. Do-Not-Resuscitate (DNR) orders do not necessarily cover ICDs. In a descriptive analysis of 65 deceased ICD patients, all of them had DNR orders in place at time of death, but ICD therapy was active in 51%.[2] Many ICD patients, even those with DNR and advance directives, do not specifically mention device deactivation. In a 2017 survey of 60 American ICD patients, 53% had advance directives, but only one patient included mention of the ICD in those directives.[15] The issue can become complicated when unilateral DNR orders are issued because of the futility of further medical treatment even if the patient and/or family opposes this.[15]

The complex psychology of patients who come to depend on devices is not well studied, but it probably plays a role in explaining why some patients may want a DNR but do not want to deactivate a device they have come to trust. According to a qualitative study, many ICD patients misunderstood the rescue function of the ICD and instead considered it as a sort of monitor to watch over them and felt that deactivating it was akin to suicide.[10] It appears that the more patients accept that they are at the end of life, the more willing they seem to deactivate the ICD, with some patients requesting deactivation in the last hours or even minutes of life.[10] Thus, the question about device deactivation may be revisited over the course of palliative care.

Clinicians may face their own personal impediments in device deactivation. With informed consent, deactivating an ICD at end of life is a legal and ethical intervention.[10] Some clinicians may be uncomfortable with the patient's informed choice. If the patient wants the device to be turned off, or conversely, left on, at the end of life and the physician disagrees with this informed choice, the physician may refer the patient to another physician to fulfill the request.[3]

Finally, the authors would like to suggest the development of detailed recommendations on ICD management at the end of life, so that clinicians may have productive conversations with patients and their families about the possibility of device deactivation. Patients should be informed that other advance directives or DNR orders may not cover their implanted device. If they opt for device deactivation at end of life, this should be put in writing in an informed consent.

A doughnut magnet should be provided to every care setting when patients with ICDs may be cared for at the end of life, such as residential hospices, palliative care units, cardiology wards, home hospice programs, and all staff educated about how to use them and how to access them in emergency.

Furthermore, the topic should be revisited periodically and certainly whenever the patient's health changes substantially. It is hoped that clinicians will continue to address this important issue and help inform patients to make the choices that best serve them and reflect their own values and preferences.

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