Views of patients with heart failure about their role in the decision to start implantable cardioverter-defibrillator treatment:: prescription rather than participation

Background: There is a shortage of reports on what potential recipients of implantable cardioverter-defibrillators ( ICDs) need to be informed about and what role they can and want to play in the decision-making process when it comes to whether or not to implant an ICD. Aims: To explore how patients with heart failure and previous episodes of malignant arrhythmia experience and view their role in the decision to initiate ICD treatment. Patients and methods: A qualitative content analysis of semistructured interviews was used. The study population consisted of 31 outpatients with moderate heart failure at the time of their first ICD implantation. Setting: The study was performed at Sahlgrenska University Hospital, Goteborg, Sweden. Results: None of the respondents had discussed the alternative option of receiving treatment with antiarrhythmic drugs, the estimated risk of a fatal arrhythmia, or the expected time of survival from heart failure in itself. Even so, very little criticism was directed at the lack of information or the lack of participation in the decision-making process. The respondents felt that they had to rely on the doctors' recommendation when it comes to such a complex and important decision. None of them regretted implantation of the ICD. Conclusions: The respondents were confronted by a matter of fact. They needed an ICD and were given an offer they could not refuse, simply because life was precious to them. Being able to give well-informed consent seemed to be a matter of less importance for them.