Background:Caring for a partner with primary malignant brain tumour can be a dramatic life-changing event. Primary malignant brain tumour is known to give poor life expectancy and severe neurological and cognitive symptoms, such as changed behaviour and personality, which demand greater caring responsibilities from spouses.Aim:The aim of the study is to explore ethical dilemmas spouses experience in the everyday care of a partner in treatment for primary malignant brain tumour.Research design, participants and research context:A phenomenological and hermeneutic qualitative descriptive design (...) was adopted as a method for collecting and analysing data. Ten spouses were interviewed twice using an in-depth, semi-structured interview guide. The interviews took place at the spouses’ homes or at the hospital.Ethical consideration:Ethical matters were considered throughout the research process. Permission from The National Committee on Health Research Ethics and the Danish Data Protection Agency was obtained.Findings:The analysis showed that the spouses perceived daily ethical dilemmas in caring for a partner with primary malignant brain tumour. Their life as well as their partner’s life had changed considerably. The main theme that emerged therefore was ‘oscillating in a changing relationship’. This theme was further elaborated in three subthemes that in more detail demonstrated the dilemmas: ‘doing the right thing in unpredictable daily situations’; ‘torn between patience and guilt’; and ‘living in a time of uncertainty, hope and despair’.Conclusion:Caring for a partner with changed behaviour and personality due to primary malignant brain tumour may involve exhausting ethical caring dilemmas. Spouses’ married life may change to a semi-professional asymmetrical relationship, which is challenged by the oscillation between acting responsibly for their partners’ well-being and caring dilemmas with no answer for what the right thing to do is. Mixed feelings of right and wrong, patience and guilt, hope and despair seem to be spousal companions through their partners’ progressing illness. (shrink)

Feelings of guilt are human emotions that may arise if a person committed an action that contradicts basic moral mores or failed to commit an action that is considered moral according to their ethical standards and values. Psychological scholarship distinguishes between altruistic guilt (AG) and deontological guilt (DG). AG results from having caused harm to an innocent victim, either by acting or failing to act, whereas DG is caused by violating a moral principle. Although physicians may be expected to experience (...) frequent feelings of guilt in their demanding and intensive work, it is surprising to find that this issue has not been explored in the professional literature on medical ethics. To that end, we conducted a qualitative study that included personal in-depth interviews with Sunni Muslim gynaecologists. These doctors provide underground infertility care and perform religiously forbidden treatments involving sex selection and gamete donation. They opened their hearts and spoke about the emotionally taxing pangs of conscience they suffer. Analysing their narratives led us to characterize their feelings of guilt as DG. We discuss the causes for their plight and the way they cope with it, compare DG to the concept of moral distress, and call for future research on clinicians’ feelings of guilt and pangs of conscience. (shrink)