Abstract

The over-riding aim of this thesis was to obtain a deeper understanding of the way patients with cardiac problems view both information related to their health and medical decisions and their role in decision-making processes. An important objective was to identify reasons why patients do not ask for or assimilate information or why they do not want or feel that they are able to influence medical decisions. The starting point for the investigations was five ethical problem areas in cardiology practice. They included informing patients with heart failure about their diagnosis and treatment, involving them in decision-making processes associated with cardiopulmonary resuscitation and implantable cardioverter defibrillators, obtaining informed consent from patients in the emergency phase of an acute myocardial infarction and informing and caring for patients without any obvious cause of chest pain. A qualitative analysis of semi-structured interviews conducted with patients treated at Sahlgrenska University Hospital, Göteborg, was employed in all five studies. The results indicate the following. Patients may regard themselves as being satisfactorily informed, even though they have a low level of knowledge and have unanswered questions. Several reasons for not requesting additional information, including prognostic information, or trying to improve knowledge were identified. For the majority of the respondents with heart failure, it was simply a matter of course that they wanted CPR and the question of whether CPR should be undertaken was therefore not regarded as a topic of immediate interest. In general, they wanted to discuss the issue but trusted the physicians to make the right final decision. The respondents who had received an ICD felt confident about opting for the treatment after being told that it was the best treatment for life-threatening arrhythmias. Very little criticism was directed at the lack of information and the lack of participation in decision-making processes, despite reports of incomplete information and a passive role in the decision. Those respondents who had been included in studies in connection with suffering an AMI had a very limited knowledge of the trial to which they had consented. They reported various problems related to the consent procedure in this particular situation. Ethical questions relating to patient information and patients? participation in decision-making were discussed in the light of the results obtained from the interviews and current empirical knowledge. Proposals for ways of dealing with the ethical problems raised in this thesis were made