Implantable cardioverter defibrillator deactivation and advance care planning: a focus group study

Abstract

ObjectiveImplantable cardioverter defibrillators can treat life-threatening arrhythmias, but may negatively influence the last phase of life if not deactivated. Advance care planning conversations can prepare patients for future decision-making about implantable cardioverter defibrillator deactivation. This study aimed at gaining insight in the experiences of patients with advance care planning conversations about implantable cardioverter defibrillator deactivation.MethodsIn this qualitative study, we held five focus groups with 41 patients in total. Focus groups were audio-recorded and transcribed. Transcripts were analysed thematically, using the constant comparative method, whereby themes emerging from the data are compared with previously emerged themes.ResultsMost patients could imagine deciding to have their implantable cardioverter defibrillator deactivated, for instance because the benefits of an active device no longer outweigh the harm of unwanted shocks, when having another life-limiting illness, or when relatives would think this would be in their best interest. Some patients expressed a need for advance care planning conversations with a healthcare professional about deactivation, but few had had these. Others did not, saying they solely focused on living. Some patients were hesitant to record their preferences about deactivation in advance care directives, because they were unsure whether their current preferences would reflect future preferences.ConclusionsAlthough patients expressed a need for more information, advance care planning conversations about implantable cardioverter defibrillator deactivation seemed to be uncommon. Deactivation should be more frequently addressed by healthcare professionals, tailored to the disease stage of the patient and readiness to discuss this topic.

My guardian angel: patients’ fears and desires related to discussing implantable cardioverter-defibrillator deactivation

“…One reason for controversy surrounding ICD deactivation is that the device is often implanted years remotely from the time deactivation is being discussed 5. In the years between, patients may become emotionally attached to their devices, similar to findings of this study with patients assigning nicknames to their ICDs (such as ‘angel’ and ‘guard dog’) 1. They may see the device less as an applied therapy and more as part of themselves 4 5.…”

“…Strikingly, there was no consensus as to the optimal timing for these conversations, and some participants preferred not to record their preferences in advance care planning documents given concerns about changing preferences. The majority of participants in this study had their ICDs implanted for primary prevention, and we do not know how many experienced ICD shocks, factors potentially affecting their perceptions and opinions 1…”

“…In their Heart paper, Stoevelaar and colleagues1 share insight from patients’ expressions of their thoughts and experiences related to advance care planning surrounding ICD deactivation. Five focus groups were held with 41 participants, exploring patient attitudes towards ICD deactivation and delivery of information and communication about ICDs towards the end of life.…”

“…As pointed out by Stoevelaar and colleagues,1 early advance care planning, including conversations about ICD deactivation, is recommended. Assessing patient readiness for advance care planning is a necessary first step before entering into a discussion that may be emotionally charged.…”

Heartbeat: When should patients consider implantable cardiac defibrillator deactivation?

“…Thus, carefully designed and implemented qualitative research studies are needed to inform clinical practice. In this issue of Heart , Stoevelaar and colleagues1 performed a focus group study using a constant comparative method for analysis of transcriptions from group sessions with 41 participants. Patients reported that few physicians discussed deactivation of ICDs.…”