Theme 1: Limited Disease Understanding and Overestimation of Device Function
Although respondents were able to cite specific details about cardiac function, their overall understanding of prognosis was ambiguous. Some hoped that their clinical status would improve spontaneously. Others expressed frustration with their limited understanding of etiology and trajectory, which left their futures uncertain:
Respondent (40M, class III, BiV ICD): I'd like to know what caused [my HF…]. And I'd like to know if it's possible to fix it […]Generally speaking, where I'm at right now, is I kind of feel like I'm just in…limbo.
Participants frequently wished for improved symptom control without an in-depth understanding of what that might entail:
Respondent (55F, class III, ICD): No. There's nothing really I can do [to manage my symptoms] at home. I don't have to do really anything there. I just know I usually just go to the hospital. I know where it's at and what they do to me.
This confusion regarding disease management did not extend to respondents' devices, which they viewed with enthusiasm. Several had previously been defibrillated and were quick to note that they might not be alive had they not received the shock. When asked whether they experienced any anxiety or concerns regarding their devices, participants generally responded positively, with comments such as “I have faith in the defibrillator” and “[It's] done its job and saved my life.”
Respondent (65M, class IV, ICD): […] the way I look at it, [the defibrillator] saved my life…even though it didn't feel good getting shocked ... If I would have had [a pacemaker], I would have probably been dead. But with the defibrillator kicking in, I understand it brought my heart back into rhythm. So it did save my life.
The conviction that the device provided a concrete and substantial benefit was often accompanied by confidence on the part of the participants about their understanding of the device and its functionality, even when inaccurate:
Respondent (82M, class III, BiV ICD): [I feel wonderful about my defibrillator] …I have my PhD in defibrillators going on.
Misconceptions about device role in overall disease management were pervasive. Respondents with ICDs in particular viewed their device's role as much broader than its clinical definition would suggest. When asked about possible deactivation of his single-chamber ICD in the setting of eventual terminal progression, this patient (81M, class II) believed incorrectly that his device's functionality could be increased:
Respondent (81M, class II, ICD): …No, no, no, not deactivate. If anything, I'd want them to activate it more. Besides if they deactivate the device what will happen in, heart surgery? I don't think—I know people just got a defibrillator and had by-pass heart surgery.
Theme 2: Inadequate Discussion About Device Role, Limitations, and Advance Care Planning
Further questioning revealed that many respondents, particularly those with cardiac implantable electronic devices, had experienced little counseling regarding the role of the device as their disease progressed, a factor that likely contributed to their misperceptions. Many respondents with devices denied any discussion with their cardiologist about their choices regarding their device if their disease were to progress. Of the 18 participants with cardiac implantable electronic devices included in our study, 14 reported having had no conversation about possible device deactivation in the future; only 1 participant had discussed turning off his defibrillator in the event of further decline. Education about devices frequently centered around technical aspects of management, specifically device maintenance:
Respondent (79M, class III, ICD): …I've already had [the generator] changed three times.
Respondents deferred to their cardiologists regarding device management, attributing the same lifesaving properties to the provider as to the device. The cardiologist drove discussion, and the patient deferred to their recommendations:
Respondent (53M, class III, ICD): If my mechanic says, "You need a new spark plug," I'm like, "Okay, go ahead." Doctor says, "You need a new heart. "Okay, go ahead." I don't want to know what they do; I just want them to do it.
Respondent (60M, class III, BiV ICD): The defibrillator, what's going to happen, if my heart goes—it's just like being in an ambulance. They're going to shock me and that's going to be it. As a matter of fact, I was just at my other doctor the other day, and he checked it out and he said I'm doing great. He says, "Your battery's going to last you for about eight more years." I said, "That's good.”
This focus on technical features of devices, but not their implications, left respondents unprepared to talk about the broader implications of their disease.
Theme 3: Confidence in Novel Technologies and Ongoing Advances
Despite a lack of clarity regarding device function or outcome, respondents continued to voice the expectation that novel devices and therapies would continue to drive their disease management.
Participants with a device frequently expressed the expectation that other novel interventions would continue to improve their prognosis:
Respondent (60M, class III, BiV ICD): […My doctors] have already talked about a heart pump, although I'm not ready for that yet. […] The heart pump will go on before the transplant.
These interventions frequently culminated in planning for transplantation, which was taken for granted:
Respondent (61M, class IV, PPM, BiV ICD, left ventricular assist device): …I've faced my mortality and the left ventricular assist device and the prospect of what if that didn't exist, where would I be today? And I'm looking forward to a heart transplant.
Other respondents described a spectrum of novel innovations in what they viewed as a rapidly evolving care landscape:
Respondent (83F, class II, PPM): But I still believe that it's not over until it's over. There's so much today that can turn things around technology-wise that there is more hope, I think, than there used to be.
Respondent (55M, class IV, BiV ICD, left ventricular assist device): Do you remember the first heart pumps to come out? […] They had to carry a suitcase with batteries in it, with wheels. And now look at it, I can put it on a belt. It's just a matter of time…[before] you just go on, you just buy a heart.
Respondent (60M, class III, BiV ICD): I have been doing a lot of research on [stem cell transplantation]. They are actually growing livers, kidneys and hearts….
Even patients who did not have implantable devices referenced a device-driven future:
Respondent (75M, class III, no device currently): Yeah. As I said before, [my cardiologist is] going to put in one more stent and they're going to put in [an ICD]. That's going to be at the end of this month. And hopefully they can get—they have to get the heart more than 15% efficiency, or they said you'll just be tired. So hopefully they can do that.
These perceptions of a limitless future, maintained by ongoing interventions, conflicted with other planning strategies, including consideration of palliative care consultation and advance care planning.
Respondent (61M, class IV, PPM, BiV ICD, left ventricular assist device): I haven't [participated in advance care planning] because I don't think I need any. My wife is my caregiver. left ventricular assist device has given me a very good quality of life, and I'm listed for transplant and the next step for me is transplant.
Our findings suggest that the barriers to advance care planning in patients with cardiac devices are multifactorial and are impacted not only by patient-provider communication and education but also by our societal relationship with novel technologies, a phenomenon described as the “biotechnical embrace.”22 Not only do these findings reinforce the limitations of existing preimplantation shared decision-making paradigms; they also suggest that societal appetites for novel technological development may contribute to the belief that ever-more complex innovations will be available to forestall death. These results lend nuance to previous studies indicating that cardiac devices are poorly understood by patients with HF11,23–25 and suggest that approaches to improve shared decision making in this population may need to address cultural, as well as medical, factors.
The exclusion of devices from advance care planning for patients with HF has been extensively demonstrated.13,15,26,27 When combined with the frequent overestimation of device utility among both patients and providers,23,25 this discrepancy creates a gap in the care dialogue that may have far-reaching impact upon patient approaches to their disease and therapy. Advance directives for patients with HF rarely address device management, and few hospitals have implemented formal policies for device deactivation at the end of life.28 Despite evidence suggesting that, by 5 years postimplantation, 50% of patients with ICDs will be either enrolled in hospice or deceased,29 providers and institutions have been slow to discuss device management at the end of life. A majority of providers agree that deactivation of ICDs and left ventricular assist devices with family consent is ethical at the end of life,30 but many express discomfort discussing these issues with their patients.14,31,32
Patients navigating HF treatment are expected to understand and incorporate complex information into their decision making regarding cardiac devices. Our respondents did demonstrate some understanding of their disease trajectory and the role of the device therein, although it is unclear the extent to which this knowledge enabled them to truly participate in shared decision making. Many had already been part to a successful intervention (device placement and, on occasion, defibrillation) and correctly highlighted the role of their device and future technology in disease management. However, those respondents with end-stage disease, whose care trajectory should theoretically have already included discussions of both advance care planning and involvement of specialty palliative care, remained fixated on future procedural interventions for which their candidacy was questionable. These findings are corroborated by studies demonstrating that patients who have experienced ICD-mediated defibrillation often display greater confidence in and less willingness to discontinue their device.12,33 Although the desire to continually search for therapies to extend life is understandable, it is unclear that patients fully appreciate the nuanced implications of device therapy.
Our findings suggest that cardiac devices, and specifically the technological developments that they represent, may act as an additional confounder to establishing goals of care for patients with advanced HF. The anticipation of device-mediated stability expressed by our respondents, accompanied by the expectation that emerging technologies will continue to preempt decline, may complicate delivery of context-appropriate advance care planning. Further research is needed to determine whether current practice regarding shared decision making for devices is adequate and, if not, how better to provide patients with a complete understanding of their options and potential future decision-making scenarios before device implantation. Our findings suggest that explicit discussion of device roles and their limitations, as well as the availability of viable “next steps,” may promote more realistic expectations. Specialist palliative care may have a role to play in these discussions similar to that played in advance care planning before left ventricular assist device implantation, although all cardiology providers should possess fundamental competency in eliciting goals of care.34,35
As with any study, several limitations are worth noting. Respondents were drawn from a single institution, a large academic quaternary care medical center, and were predominantly male and white; all of these factors may limit generalizability of our findings. In addition, although the overall proportion of respondents with a cardiac device was high, representation of advanced therapies, particularly left ventricular assist devices, was limited.
Misconceptions about cardiac devices and their role in disease management may be related to unrealistic expectations about the future for patients with HF. Focusing on technological interventions may limit patient receptiveness to discussion about prognosis and advance care planning. Further research is indicated to develop and evaluate initiatives educating patients with HF about their devices and facilitating meaningful discussion of advance care planning and device deactivation into the device implantation process.
What's New and Important?
- - Authors of previous studies have demonstrated that patients with HF have limited understanding of cardiac devices and their impact on prognosis.
- - In this study, we find that the experience of having a device implanted generates expectations that future technological interventions will be made available to preempt clinical decline.
- - This embrace of technology seems to act as a barrier to advance care planning in patients with HF.
The authors sincerely thank the following individuals for their assistance in conducting the study: Megan Hamm, PhD; Adelina Malito, MSW; Laura Obregon, BS; Ramy Khalil, MD; and Zachariah Hoydich, BS. We also thank the participants who offered their time and perspectives, without which this study would have been impossible.
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Keywords:Copyright © 2019 Wolters Kluwer Health, Inc. All rights reserved
advance care planning; cardiac devices; heart failure; implantable cardioverter-defibrillator; palliative care; permanent pacemaker; ventricular assist device