Patients’ decision making to accept or decline an implantable cardioverter defibrillator for primary prevention of sudden cardiac death

Background Patients are offered implantable defibrillators (ICDs) for the prevention of sudden cardiac death (SCD). However, patients’ decision‐making process (DMP) of whether or not to accept an ICD has not been explored. We asked patients about their decision making when offered an ICD. Design/Setting A grounded theory methodology was employed. Patients were recruited from three ICD centres. Those who received an ICD underwent interviews the first month after implant. Declining patients had interviews at their convenience. In‐depth analysis of transcripts was completed. Identified themes were placed along process pathways in a DMP model and tested. Findings Forty‐four patients consented to participate (25% women). Thirty‐four accepted an ICD and 10 (23%) declined. Ages ranged from 26 to 87 (mean = 65; SD = 12.5). Participants were retired (65%), had ischaemic heart disease (64%) and some post‐secondary education (52%). The DMP was triggered when patient’s risk for SCD was communicated. The physician’s recommendation and a new awareness SCD risk were motivators to accept the ICD. Patient’s decision‐making approaches fell along a continuum, from active and engaged to passive and indifferent. Patient’s approaches were influenced most by the following: (i) trust; (ii) social influences and (iii) health state. Conclusions Health‐care providers need to recognize the DMP pathways in which ICD candidacy and SCD risk are understood. The factors that influence a patient’s decision warrant discussion pre‐implant. It is imperative that patients comprehend the meaning of ICD candidacy to make an informed decision. Participants did not recall alternatives to receiving ICD therapy.