THREE MONTHS after her father's death, LaVonne still had flashbacks about watching his frail, lifeless body “convulsing” in his recliner with every shock from his implantable cardioverter defibrillator (ICD). Remembering her powerlessness. Living with the regret that she hadn't been able to ease this transition from life to death as she'd eased his way through his final years and days of terminal illness.
During his last hospitalization, he'd been very clear that he didn't want CPR, ventilator support, or another hospitalization. He'd had do-not-resuscitate (DNR) status in the hospital. But here at home, she had no documentation to prevent the medics from trying to save him, so she didn't call 911.
With the third shock of the ICD, LaVonne began to accept that this was the way her father would die. It wasn't the peaceful passing she'd envisioned for him. The reality was that she'd have to wait for the ICD to finish the job it was programmed to do. She longed to stroke his head to comfort him, but she erroneously believed that she'd be shocked if she touched him. Instead, she crouched near his head and whispered her love in his ear.
ICDs at the end of life
Patients who have a functioning ICD in place are at risk for being shocked as they're actively dying.1 This happens more often than we may recognize, as some shocks may not be outwardly noticeable or aren't witnessed. A study found that 31% of patients with ICDs were shocked in the last 24 hours of life and experienced anywhere from 1 to 53 shocks. In addition, about half of patients with DNR orders still had a functional ICD 24 hours before they died, and 24% of these patients received shocks.1
As in LaVonne's case, watching a dying patient endure shocks can be very distressing, not only for the patient and family but also the nurses providing care. In my experience, most nurses who work in cardiology or in hospice have either personally witnessed or heard a firsthand account of a situation where a person was being shocked while actively dying. As a result, nurses may feel moral distress when caring for a patient with an activated ICD who is dying. They may feel a moral imperative to educate the patient about deactivating the ICD, yet the patient and family may not be ready to hear this, particularly if they've never before been told about this option. But the issue should be addressed, because the risk of being shocked in the last 24 hours of life is very real. It can be prevented by discussing this risk with the patient at appropriate times and deactivating the shocking function toward the end of life if that's what the patient wants.2
Broaching the subject
The option of ICD deactivation should be part of ongoing shared decision-making and advance care planning conversations with seriously ill patients. Ideally, patients should learn about this option before ICD implantation, when they're learning about the device's functions, benefits, and risks. For example, the conversation may begin like this: “At some point your health may get worse, to the point where you might not want the device to shock you any longer to prolong your life. When we get to this point, we can talk about the option of turning off the shocking part of the ICD's settings.”
Shared decision-making with patients is recommended as part of an annual cardiovascular evaluation.3 This annual review should include talking about the ICD and its functionality. If the ICD needs replacement due to battery life or other issues, this is another opportunity for clinicians to discuss the option of deactivating it using shared decision-making rather than assuming replacement is part of the patient's wishes.
Conversations toward end of life
Discussion about the ICD should be included in conversations about DNR status as a separate but related issue.4 Unfortunately, discussions between patients and providers about the option of ICD deactivation are infrequent, despite guideline recommendations about the importance of these conversations.2,5,6 Decision aids can be useful in guiding this type of shared decision-making with evidence-based information from a balanced, nonbiased perspective. An excellent ICD decision aid is available at https://patientdecisionaid.org/icd.
ICD conversations between the patient and provider should include the following information:4
- purpose and function of the ICD
- the patient's prognosis and likely course of illness
- changes at the end of life that may increase the risk of the patient being shocked while dying.
Also discuss what happens if the ICD is deactivated in the context of how and when the patient wants to die. For example, the nurse might ask, “When thinking about dying, have you thought about what kind of death you would want?”
If the patient wants to die quickly or “in my sleep,” deactivating the ICD may increase the likelihood that death will be quick. If the patient has goals to accomplish, however, he or she may want to leave the ICD activated for the time being.
Options for ICD settings at the end of life include:
- no change to ICD settings, with an understanding that the patient may receive shocks.
- temporary ICD deactivation on an emergent basis, when the device is functioning inappropriately at the end of life. This is accomplished by taping a medical-grade magnet over the device and notifying the healthcare provider. The device will be inactivated as long as the magnet remains in place; removing it restores its previously programmed parameters.7 A p.r.n. or standing order should be in place before the nurse attempts this intervention.
- deactivating the ICD based on an order to deactivate from the provider. In a hospital, the electrophysiology or cardiology staff may be able to deactivate the ICD if they have appropriate equipment for the device. Alternatively, this can be accomplished through the device's rhythm management company, which may require the signed order to be scanned or faxed to the company. Typically, the company will then send a cardiac rhythm management device specialist with appropriate equipment to the patient's location. Ideally, a team member known and trusted by the patient should be present to provide emotional support for the patient and family during this procedure.4
Information about the ICD and its functionality should be readily available to all caregivers. See Bridging gaps in ICD documentation for guidelines.
Bridging gaps in ICD documentation
Documentation is key to promoting appropriate care for patients with ICDs, especially in emergencies. However, all too often, this information is difficult to find or missing altogether. The author conducted an informal survey via Facebook to explore what nurses need to know about caring for a patient with an ICD.8 Sixty-six nurses participated in this study, all with experience caring for patients with ICDs in various settings and geographic areas, and working with various types of medical records. They identified numerous gaps in ICD documentation that present a barrier to safe care and rapid response in an emergency. This research suggests that the following information should be current, accurate, and readily available in the medical record of any patient with an ICD wherever the patient receives care, including long-term care:8
- identification of the patient having an ICD in the medical record.
- the ICD type and manufacturer, and date of implantation. This information can be put on a card kept in the patient's wallet.
- ICD settings, including the programmed parameters for both defibrillation and pacing. This is available from the ICD interrogation report or electrophysiology note. If the device has been deactivated, this should be noted.
- the contact person for the patient's ICD care. Usually, this is the electrophysiology or cardiology provider responsible for the ICD interrogations.
Ideally, information about the ICD itself will be readily linked to the patient's code status or other emergency care information in the electronic medical record. This will give rapid access to emergency providers who need to know what to expect from the ICD in a rapid response or code situation.
1. Kinch Westerdahl A, Sjöblom J, Mattiasson AC, Rosenqvist M, Frykman V. Implantable cardioverter-defibrillator therapy before death: high risk for painful shocks at end of life. Circulation. 2014;129(4):422–429.
2. Lampert R. Quality of life and end-of-life issues for older patients with implanted cardiac rhythm devices. Clin Geriatr Med. 2012;28(4):693–702.
3. Allen LA, Stevenson LW, Grady KL, et al Decision making in advanced heart failure: a scientific statement from the American Heart Association. Circulation. 2012;125(15):1928–1952.
Panke JT, Donaho E, Fahlberg BB, Whitehead P. Compendium of Treatment of End Stage Non-Cancer Diagnoses: Heart Failure. 3rd ed. Dubuque, IA: Kendall/Hunt; 2018.
5. Hill L, McIlfatrick S, Taylor BJ, et al Implantable cardioverter defibrillator (ICD) deactivation discussions: reality versus recommendations. Eur J Cardiovasc Nurs. 2016;15(1):20–29.
6. Lampert R, Hayes DL, Annas GJ, et al HRS Expert Consensus Statement on the Management of Cardiovascular Implantable Electronic Devices (CIEDs) in patients nearing end of life or requesting withdrawal of therapy. Heart Rhythm. 2010;7(7):1008–1026.
Garlitski AC. Management of cardiac implantable devices in patients receiving palliative care. UpToDate. 2016. http://www.uptodate.com.
Gedemer T, Woywod P, Fahlberg B. Nurses' experience caring for patients with implantable cardioverter defibrillators: documentation challenges and recommendations. Poster presented at University of Wisconsin-Madison; April 10 & 24, 2014; Madison, WI.
Braun LT, Grady KL, Kutner JS, et al Palliative care and cardiovascular disease and stroke: a policy statement from the American Heart Association/American Stroke Association. Circulation. 2016;134(11):e198–e225.
Wilkoff BL, Fauchier L, Stiles MK, et al 2015 HRS/EHRA/APHRS/SOLAECE expert consensus statement on optimal implantable cardioverter-defibrillator programming and testing. Heart Rhythm. 2016;13(2):e50–e86.