Patients with ICDs in this qualitative study were uniformly unaware that device deactivation was a decision that they might face in the future. Furthermore, and despite multiple prompts from the group facilitators, no participants were willing to engage in advance care planning discussions regarding deactivation—either during the focus group or with their own clinicians. These results have important implications for advance care planning as the number of people with ICDs is rapidly growing.
These results are markedly different from other research examining patients’ willingness to engage in advance care planning. In the majority of other studies examining patients’ wishes for care at the end of life, investigators have found that patients are quite open to discussing, and indeed want, to address treatment options and goals of care near the end of life.23,24
There are several possible reasons for why our results differ from other studies of advance care planning. First, ICDs are fundamentally different from other interventions that patients might receive at the end of life and those that have previously been examined in other advance care planning studies. Unlike mechanical ventilators, feeding tubes, and dialysis, ICDs are typically implanted well before the patient perceives themselves to be seriously and terminally ill. That is, most patients who receive an ICD are at risk for a fatal arrhythmia but are not symptomatic from a serious illness that would place them at high risk for a noncardiac death. Given the tremendous fear of receiving a shock from the ICD expressed by patients in this study, the inherent “emergency rescue” nature of the ICD, and patients’ faith in the ICD’s life-restoring ability, it may be impossible for otherwise “healthy” patients to envision a situation when they would want this life-saving technology withdrawn like they would for a hypothetical mechanical ventilator or feeding tube.
Second, the participants in our study did not appear to fully comprehend the nuances and intricacies of these devices. This lack of knowledge may also inhibit their ability to engage in conversations, as they may not have the knowledge necessary to adequately weigh the option of deactivating the device. In addition, the internalized and unseen nature of the device makes it easier for patients to avoid conversations about them.
Third, patients appear to develop a complex psychological relationship with their ICD in a way unlike other interventions. The devices provide a sense of security (“like an insurance policy” or like a trusted friend) and the very notion of removing them is “like an act of suicide.” ICD discharges seem to be psychologically destabilizing, as a shock “plays games” with the patient’s emotional well being. It is somewhat paradoxical that, in the same focus group, patients can acknowledge the anxiety of getting shocked but nevertheless continued to speak of the device as only beneficial. Participants seem to have developed a symbiotic relationship with the device. If the ICD is seen as a friend, then it is difficult for a patient to believe that the device could actually do them any harm. The interplay of these psychological factors results in a state of perceived immortality for these participants—they will either get a new heart or just keep their ICD “forever.”
Many of the participants in our study wanted their physician to make a decision about deactivation for them, and this may be a phenomenon related to the fact that the participants were all at a similar point in their overall state of health. The research literature on decision making demonstrates that patients’ desired role in decision making may change over the course of their illness. For patients who are relatively healthy, for whom the medical decisions are relatively simple, patients want to either make the decisions themselves or share decision making with their families.25
As a patient’s illness progresses, however, they go through a period of more complex decision making where they desire less autonomy and want their physician to make the decision for them.25,26
Participants in this study might be included in this category—the decision about whether to deactivate the ICD is complex (both medically and psychologically) given their current state of health, so at the time of the interviews, patients ceded decision making to their physician. As illness severity worsens and patients approach the end of life, there are fewer options available, and thus, decisions are simpler; the literature supports that patients near the end of life desire to be more autonomous and make decisions for themselves.27,28
There are no data from this study to show that these participants’ desired roles in decision making will necessarily change as their health worsens, so future work will need to examine this issue.
This study had several limitations that should be noted. First, although all of the patients in this study had a serious cardiac condition that required an ICD, they had an excellent performance status and did not have other major comorbid illnesses. It is possible that this might have created a selection bias against patients who were more debilitated and may have been more likely to contemplate their own mortality and the changing role of the device. The participants in this study were all drawn from a single academic medical center and may not be representative of the larger population of patients with ICDs. The majority of the patients included in this study were male and white, which may limit the generalizability of these findings. It should be noted, however, that disparities in implantation have shown that women and minorities receive these devices with less frequency than other groups.29,30
Another potential limitation is that patients may either not comprehend or not remember information that their physician had told them,31,32
so it is possible that some of the patients included in this study may have previously been told that they could have their ICD deactivated. Finally, a relatively small number of patients were enrolled. The investigators chose not to continue to enroll patients because it became apparent near the end of the data analysis that no new concepts were emerging from the data (i.e., thematic saturation had been reached), but these finding will need to be further explored in future larger, quantitative studies.
In this study of community-dwelling, ambulatory individuals with ICDs, we found that patients were either unwilling or unable to engage in conversations about deactivation. While the goal of the study was to identify barriers that could be overcome, what we found was that patients’ perceptions and understandings of their device may be the most significant difficulty that impedes them from engaging in discussions about the management of the ICD. For clinicians who wish to have conversations about these devices with patients near the end of life, one approach might be to first elicit larger goals of care, and then assist patients and families with a benefit/burden analysis to determine how each specific treatment decision should be made in the context of their desires. Discussions about deactivating ICDs can then be seen in the context of other goals of health care, thus helping patients understand that the decision to deactivate the ICD may be a decision in-line with their overall wishes as their illness progresses. Future work that involves both qualitative and quantitative analyses is needed to create communication interventions that will help physicians elicit these larger goals of care and make ICD deactivation decisions within this framework.