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.