“Why Would I Choose Death?”

Abstract

Background Although cardiology organizations recommend early introduction of palliative care for patients with heart failure (HF), integration has remained challenging, particularly in patients with cardiac devices such as cardiac implantable electronic devices and left ventricular assist devices. Study authors suggest that patients often have limited and erroneous understanding of these devices and their implications for future care. Objective The aim of this study was to assess perceptions of cardiac devices in patients with HF and how these perceptions impacted advance care planning and future expectations. Methods This study used qualitative semistructured interviews with 18 community-dwelling patients with New York Heart Association stage II to IV HF. Results We interviewed 18 patients (mean ejection fraction, 38%; mean age, 64 years; 33% female; 83% white; 39% New York Heart Association class II, 39% class III, and 22% class IV). All had a cardiac implantable electronic device (6% permanent pacemaker, 56% implantable cardioverter-defibrillator, 28% biventricular implantable cardioverter-defibrillator); 11% had left ventricular assist devices. Patients with devices frequently misunderstood the impact of their device on cardiac function. A majority expressed the belief that the device would forestall further deterioration, regardless of whether this was the case. This anticipation of stability was often accompanied by the expectation that emerging technologies would continue to preempt decline. Citing this faith in technology, these patients frequently saw limited value in advance care planning. Conclusions In our sample, patients with cardiac devices overestimated the impact of their devices on preventing disease progression and death and deprioritized advance care planning as a result.

Advance care planning experiences of patients with heart failure and their families: a qualitative systematic review protocol

“…20,21 In addition, a systematic review of quantitative studies on ACP in patients with HF indicated that ACP intervention methods are highly heterogeneous. 22 Although the experience of patients with HF is reported to be unique, 6,18 ACP interventions specific to patients with HF remain unclear.…”

“…Patients with HF do not tend to consider their own mortality, as the characteristics of the disease follow an uncertain course. A previous study showed that patients focus on their persistent physical symptoms and do not consider the end-of-life stages of their condition 6. In addition, advances in therapeutic agents and treatments specific to HF, such as implantable devices, promote patient optimism and delay their participation in end-of-life discussions 6.…”

“…A previous study showed that patients focus on their persistent physical symptoms and do not consider the end-of-life stages of their condition 6. In addition, advances in therapeutic agents and treatments specific to HF, such as implantable devices, promote patient optimism and delay their participation in end-of-life discussions 6. A barrier to the implementation of ACP in patients with HF is the lack of awareness of hospice and palliative care by patients and their families 18…”

“…3 Stage D includes patients who cannot complete any physical activity without exhibiting HF symptoms (NYHA IV). 3 Given that the experiences of patients with HF are characterized by recurring and severe physical symptoms, 5,6 patients at stage C or D are most appropriate for examining unique patient experiences.…”

“…6 In addition, advances in therapeutic agents and treatments specific to HF, such as implantable devices, promote patient optimism and delay their participation in end-of-life discussions. 6 A barrier to the implementation of ACP in patients with HF is the lack of awareness of hospice and palliative care by patients and their families. 18 Despite the recognition of barriers to ACP specific to patients with HF, the establishment of ACP interventions remains inadequate.…”