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

Once the focus of medical treatment transitions away from life-prolonging care, implantable cardioverter-defibrillator (ICD) shocks no longer serve their intended purpose. In this situation, device deactivation may be appropriate. The potential unwanted consequences of having an ICD at the end of life are rarely addressed, although their life-saving benefits until that point are widely recognised. 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. Using thematic analysis, the authors present results centred about three major themes: (1) reflection on wishes and preferences, (2) discussing preferences, and (3) recording and reviewing preferences. Participants had widely differing opinions about ICD deactivation, ranging from equating deactivation with euthanasia to fearing shocks more than death. One was even unaware of the option to deactivate their ICD. Living with compromised quality of life was deemed undesirable, and several participants cited suffering from non-cardiac disease as a reason to deactivate the ICD. Others felt no need to even think about future ICD deactivation, instead preferring to focus on life. While some participants desired conversations about ICD deactivation with healthcare providers, few had done so, and this served as a source of discontent for some. Strikingly, there was no consensus as to the optimal timing for …