Blurred lines: Ethical challenges related to autonomy in home-based care

Abstract

Background Home-based care workers mainly work alone in the patient’s home. They encounter a diverse patient population with complex health issues. This inevitably leads to several ethical challenges. Aim The aim is to gain insight into ethical challenges related to patient autonomy in home-based care and how home-based care staff handle such challenges. Research design The study is based on a 9-month fieldwork, including participant observation and interviews in home-based care. Data were analysed with a thematic analysis approach. Participants and research context The study took place within home-based care in three municipalities in Eastern Norway, with six staff members as key informants. Ethical considerations The Norwegian Agency for Shared Services in Education and Research evaluated the study. All participants were competent to consent and signed an informed consent form. Findings A main challenge was that staff found it difficult to respect the patient’s autonomy while at the same time practicing appropriate care. We found two main themes: Autonomy and risk in tension; and strategies to balance autonomy and risk. These were explicated in four sub-themes: Refusing and resisting care; when choosing to live at home becomes risky; sweet-talking and coaxing; and building trust over time. Staff’s threshold for considering the use of coercion appeared to be high. Conclusions Arguably, home-based care staff need improved knowledge of coercion and the legislation regulating it. There is also a need for arenas for ethics reflection and building of competence in balancing ethical values in recurrent ethical problems.