Attitudes of patients, relatives and professionals regarding deactivation of implantable cardioverter-defibrillators: a scoping review

Implantable cardioverter-defibrillators (ICDs) are lifesaving devices that prevent sudden cardiac death in patients at risk of life-threatening arrhythmias. However, if ICDs are not deactivated in the terminal phase of life, they may deliver shocks that can pose a problem during end-of-life care. While guidelines recommend initiating discussions on ICD deactivation early, in practice these conversations often take place too late or not at all. A scoping review aimed at three key groups (patients, relatives, and healthcare professionals) was performed based on a search of PubMed and Embase conducted on June 9, 2024, focusing on studies examining attitudes towards ICD deactivation. Studies were selected based on their relevance to the perspectives of patients, relatives, and healthcare professionals. 32 articles were included: 16 focused on patients, 10 on professionals, 3 on relatives, and 3 on combinations of study groups. Findings revealed significant knowledge gaps. Many patients and relatives were unaware that ICD deactivation was an option. Healthcare professionals felt they lacked confidence in initiating discussions, citing time constraints and discomfort. A preference for shared decision-making was identified, although preferences varied. There was no consensus on the optimal timing for these discussions. All groups reported ethical and legal concerns about ICD deactivation. This review emphasises the need for individualised ICD deactivation discussions. Enhancing communication, education, and training for healthcare professionals is essential. Timely, ongoing conversations about ICD deactivation should be integrated into routine care, ensuring decisions align with patient values, especially in the final stages of life.