Ethical Issues in Cardiology Patients' views of information and decision-making

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 (I) informing patients with heart failure about their diagnosis and treatment, (II) involving them in decision-making processes associated with cardiopulmonary resuscitation (CPR) and (III) implantable cardioverter defibrillators (ICD), (IV) obtaining informed consent from patients in the emergency phase of an acute myocardial infarction (AMI) and (V) 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 (I, V). 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 (II). 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 (III). 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 (IV). 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

Experiences and concerns among patients being treated for atypical chest pain.

Background Many patients who are discharged from the hospital without receiving a clear-cut diagnosis of their chest pain continue to consume health care because of disabling physical and psychological symptoms. By identifying their experiences and concerns following hospitalization, an empirical basis for discussions on ways of improving the care of these particular patients will be obtained. Methods A qualitative analysis of semi-structured interviews with 38 patients with a diagnosis of unspecified chest pain was carried out. Results Two-thirds of the respondents had unanswered questions and concerns that had not been addressed. They found it difficult to understand why they had not undergone more tests. They requested an explanation for their chest pain, at the very least, or were worried about the future. Some respondents accepted the fact that they had not been given a sufficient amount of time and information. They referred to the stressful working situation of the physicians, the view that their admission could be regarded as unnecessary or that physicians at the hospital could not be expected to do more than exclude serious diseases. Conclusions Health professionals should address their patients' questions and fears properly and provide them with the most probable explanation for their symptoms. When taking the harmlessness of their symptoms or the situation of their caregivers into account, patients may find it inappropriate to impose further demands on care

When is a patient with heart failure adequately informed? A study of patients' knowledge of and attitudes toward medical information

OBJECTIVE: The primary aim was to explore patients' knowledge of heart failure and their attitudes toward medical information (prognostic information in particular) and to assess different patient-related factors that might hamper the improvement of patients' knowledge. Moreover, taking the data obtained into account, we analyzed ethical aspects of information disclosure to patients with heart failure. SETTING: The study was performed at Sahlgren's University Hospital in Gothenburg, Sweden. DESIGN: The study was a qualitative analysis of sernistructured interviews. PATIENTS: The sample included 40 patients with various stages of chronic heart failure. RESULTS: Many patients had only a limited understanding of their disease, but they still claimed that they were satisfied with the information they received. Some of them seemed to accept, to be indifferent to, or to be unaware of their low level of knowledge. The majority did not request prognostic information. CONCLUSION: We argue that patients with heart failure are adequately informed when they have reached the level of knowledge that enables them to be managed as effectively and securely as possible while being satisfied with the information provided. To give adequate information, health care providers should determine the patients' level of knowledge and explore why those patients who have a limited understanding do not assimilate or request information

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

Familial hypercholesterolemia: ethical, practical and psychological problems from the perspective of patients.

The main aim of the study was to explore the extent to which familial hypercholesterolemia (FH) influences the life of the patients affected. The study employed a qualitative analysis of semi-structured interviews with 23 outpatients who were being treated following a diagnosis of heterozygous FH at a tertiary hospital in Göteborg, Sweden. Some interviewees reported concerns related to their medication and feelings of guilt when not complying with treatment recommendations. However, none of the respondents expressed sustained emotional distress or would have preferred to be ignorant of their diagnosis. Apart from being more observant about food intake, their awareness of FH did not appear to have had a substantial impact on their way of life. In fact, those who did not suffer from any other diseases generally regarded themselves as healthy. Discussing the genetic constitution with family members with whom they had close contact was natural, but informing distant family members was not