Cardiology professional societies have recommended that patients with cardiovascular implantable electronic devices complete advance directives (ADs). However, physicians rarely discuss end of life handling of implantable cardioverter defibrillators (ICDs), and standard AD forms do not address the presence of ICDs. We conducted a telephone survey of 278 patients with an ICD from a large, academic hospital. The average period since implantation was 5.15 years. More than 1/3 (38%) had been shocked, with a mean of 4.69 shocks. More than 1/2 had executed an AD, but only 3 had included a plan for their ICD. Most subjects (86%) had never considered what to do with their ICD if they had a serious illness and were unlikely to survive. When asked about ICD deactivation in an end of life situation, 42% said it would depend, 28% favored deactivation, and 11% would not deactivate. One quarter (26%) thought ICD deactivation was a form of assisted suicide, 22% thought a do not resuscitate order did not mean that the ICD should be deactivated, and 46% responded that the ICD should not be automatically deactivated in hospice. The answers did not correlate with any demographic factors. Almost all (95%) agreed that patients should have the opportunity to execute an AD that directs handing of an ICD. When asked who should be responsible for discussing this device for an AD, 31% said electrophysiologists, 45% said general cardiologists, and 14% said primary care physicians. In conclusion, the results of the present study highlight the lack of consensus among patients with an ICD on the issue of deactivation at the end of a patient’s life. These findings suggest cardiologists should discuss end of life care and device deactivation with their patients with an ICD.
Since 2005, the American College of Cardiology/American Heart Association guidelines for the management of heart failure have advocated advance care planning for patients with end-stage heart failure More recently, an American College of Cardiology/American Heart Association and Heart Rhythm Society consensus statement on cardiovascular implantable electronic devices (CIEDs) in patients nearing the end of life included a recommendation that these patients be encouraged to complete advance directives (ADs). However, physicians are reticent to discuss the end of life handling of implantable cardioverter defibrillators (ICDs) and other CIEDs. Most ADs do not address CIED deactivation in end of life situations. Perhaps as a result, patients are sometimes shocked repeatedly and unnecessarily at the end of their life.
Methods
The local institutional review board approved the present study. Two investigators conducted a 10- to 15-minute telephone survey of patients with an ICD from a CIED clinic at a tertiary care academic medical center during June, July, and August of 2009 and 2010. A single attempt to reach patients by telephone was made. The survey instrument included primarily closed-ended questions with answer choices developed by consensus discussion among the investigators, based on our previous work and other published data.
The survey focused on ADs, including living wills and power of attorney for healthcare. The subjects were asked whether they had an AD that specifically addressed the handling of their ICD at the end of life. We then asked about their preferences for ICD handling and what the subjects believed in general about the deactivation of ICDs in the setting of a do not resuscitate order and admission to hospice. We also asked whether subjects defined ICD deactivation as physician-assisted suicide. Finally, we assessed their perspectives on specific ADs for ICDs, including when these ADs should be executed and which type of physician should have the primary responsibility for discussing ICD handling with patients.
A total of 679 patients were in the ICD database. Of these, 290 were excluded because they were not available at the time of the telephone call and did not return the call, lacked a working telephone number, had died, or had language or cognitive barriers, leaving a population of 389 potential subjects. Of the patients who were reached, 278 agreed to participate (72% response rate).
Results
The demographics are detailed in Table 1 . The sample was mostly white and male. Most of the subjects were married or living with a significant other, and most had children. Most had completed high school, and nearly ¼ had a graduate or professional degree. The subjects’ reported incomes were relatively evenly distributed among the given ranges. The subjects had had their ICD for an average of 5.15 years. More than 1/3 of subjects (n = 103, 38%) had been shocked by their ICD, with a mean number of shocks (per subject recall) of 4.69. A few subjects reported that they or a family member had ever been under the care of a palliative care physician or in hospice (n = 84, 30%), and a smaller minority had been diagnosed with cancer (n = 56, 20%).
| Characteristic | Value |
|---|---|
| Age (years) | |
| Median | 61 |
| Range | 19–90 |
| Women | 81 (29.6%) |
| Race | |
| European American | 236 (85.2%) |
| African American | 31 (11.2%) |
| Married or living with significant other | 209 (75.5%) |
| Parent | 238 (85.9%) |
| Education | |
| High school | 99 (35.7%) |
| College | 102 (36.8%) |
| Graduate degree | 68 (24.5%) |
| Self-identified religion | |
| Agnostic/atheist/none | 17 (6.1%) |
| Catholic | 104 (37.5%) |
| Protestant denomination | 79 (28.5%) |
| “Christian” | 33 (11.9%) |
| Greek Orthodox | 1 (<1%) |
| Hindu | 1 (<1%) |
| Jewish | 19 (6.8%) |
| Muslim | 1 (<1%) |
| “Spiritual” | 1 (<1%) |
| No answer | 21 (7.6%) |
| Annual income | |
| <$20,000 | 79 (28.5%) |
| $20,000–$50,000 | 63 (22.7%) |
| $50,000–$100,000 | 56 (20.2%) |
| >$100,000 | 41 (14.8%) |
| Mean period patient had ICD (years) | 5.15 |
One half of the subjects had some form of AD, either a living will (n = 71, 26%) or a power of attorney for healthcare (n = 7, 3%), or both (n = 62, 22%). A t test revealed that those with an AD were significantly older (mean age 65 years) than those without (mean age 57 years; p <0.0001). No other patient characteristics were associated with having an AD. Only 3 of the subjects who had an AD (3 of 140, 2%) had included a plan for their ICD. The vast majority of the total sample (n = 267, 96%) had never discussed with a medical practitioner what to do with their ICD in an end of life situation. In addition, most of the subjects (n = 238, 86%) had never considered what to do with their ICD if they had a serious illness and were unlikely to survive. Of those who had considered it, 82% (30 of 39) had never discussed this topic with a medical practitioner ( Figure 1 ).
When asked whether they would want their ICD deactivated in an end of life situation, 42% (n = 110) of the entire sample said it would depend on the situation, 28% (n = 75) said they would want it deactivated, and 11% (n = 28) said they would keep it turned on. When asked if they considered turning off the ICD to be a form of assisted suicide, 66% (n = 180) said no, 26% (n = 71) said yes, and 8% (n = 23) thought it would depend on the situation or were unsure. The patients interviewed in 2010 were more likely to want their ICD deactivated at the end of life than those interviewed in 2009 (49% vs 0%, p <0.0001) and were less likely to consider deactivation of an ICD to be physician-assisted suicide (12% vs 44%, p <0.0001).
No consensus was found among the subjects when asked in general about ICDs in an end of life situation with a do not resuscitate order, with a sizeable minority (n = 62, 22%) stating that an ICD should not be deactivated in this situation. Also, no consensus was found when the interviewer asked about a situation in which a patient has entered hospice, with <1/2 of subjects (n = 128, 46%) responding that the ICD should be deactivated, 32% (n = 90) responding that it should not, and 20% (n = 54) stating they thought deactivation depended on the situation or were not sure ( Figure 2 ). The answers did not significantly correlate with any demographic factor or presence or type of AD.
Almost all the subjects (264, 95%) agreed that patients should be given the opportunity to complete an AD that dictates the patient’s preferences for the handing of an ICD at the end of life. Consensus was lacking regarding when this AD should be executed, although most indicated that it should be executed during a follow-up visit (n = 95, 34%) or in an end of life situation (n = 110, 40%), rather than at implantation (n = 44, 16%; Figure 3 ). When asked who should be responsible for discussing end of life ICD handling with patients, 83 (31%) said electrophysiologists, 126 (45%) said general cardiologists, 39 (14%) said primary care physicians ( Figure 4 ).
