Background Implantable Cardioverter Defibrillator (ICD) shocks can negatively influence the last phase of life. Advance care planning, timely and frequently discussing ICD deactivation with the patient, can help patients to make a well-informed decision about future ICD deactivation. Perspectives of patients on ICD deactivation are however largely unknown.

Methods Focus groups with ICD patients were conducted using a predefined topic list and were audiotaped and transcribed. Transcripts were analyzed using the constant comparative method.

Results Forty-one patients participated in a total of five focus groups. Average age was 64 years and 56% of patients were male. Many patients expressed a need for more information about ICD deactivation. Although most patients agreed that it would be appropriate to deactivate the ICD on a certain point in the disease trajectory, they had difficulties deciding on the right moment to do so, indicating the need to frequently re-assess their preferences. Possible circumstances in which patients would consider deactivating their ICD in order to avoid shocks were: a terminal stage of their disease, and a diminished quality of life. Arguments against deactivation were also mentioned, and mainly concerned not wanting to give up on life, both for themselves and for their family.

Conclusion(s) There is room for improvement in informing patients about ICD deactivation in the last phase of life. We found that patients’ perspectives towards ICD deactivation were highly personal and sometimes ambivalent. This emphasizes the importance of early and recurring discussions on this topic.