Ethical dilemmas experienced by spouses of a partner with brain tumour

摘要

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.