"That's like an act of suicide" patients' attitudes toward deactivation of implantable defibrillators

OBJECTIVE: To understand potential patient barriers to discussions about implantable cardioverter defibrillator (ICD) deactivation in patients with advanced illness. DESIGN: Qualitative focus groups. PARTICIPANTS: Fifteen community-dwelling, ambulatory patients with ICDs assigned to focus groups based on duration of time since implantation and whether they had ever received a shock from their device. APPROACH: A physician and a social worker used a predetermined discussion guide to moderate the groups, and each session was audiotaped and subsequently transcribed. Transcripts were analyzed using the method of constant comparison. RESULTS: No participant had ever discussed deactivation with their physician nor knew that deactivation was an option. Patients expressed a great deal of anxiety about receiving shocks from their device. Participants discussed why they needed the device and expressed desire for more information about the device; however, they would not engage in conversations about deactivating the ICD. One patient described deactivation "like an act of suicide" and all patients believed that the device was exclusively beneficial. Patients also expressed a desire to have their physician make the decision about deactivation. CONCLUSIONS: None of the patients in our study knew that they might need to deactivate their ICD as their health worsens. These community-dwelling outpatients were not willing to discuss the issue of ICD deactivation and their attitudes about deactivation might impede patients from engaging in these conversations. These findings are in contrast to findings in other advance care planning research and may be related to the unique nature of the ICD.