Conflicting Conceptions of Autonomy: Experiences of Family Carers with Involuntary Admissions of their Relatives

Abstract

This paper explores dilemmas of family carers experienced during the care-seeking process for a relative suffering from Korsakoff's syndrome. The main objective of this study was to find clues to improve this delicate process by generating knowledge about the care-seeking process towards a coercive admission. Data were derived from 11 in-depth interviews. The analysis unveiled a core concept that could be labelled ‘imposing care’. It reflects the essence of the family carers' struggle to find appropriate care for the relative. During the care-seeking process carers felt tension between infringing the relative's autonomy, and maintaining or restoring human dignity. Respecting autonomy as the ‘right to self-determination’ implied an attitude of non-interference and consequently the physical deterioration of the relative suffering from Korsakoff's syndrome. In the theoretical reflection on the data a relational view of autonomy is proposed in which all people are seen as interdependent. Thus, not only values such as sovereignty and freedom should be fostered, but also values such as attentiveness and trust. Coercive admissions should be made possible. Non-interference results in immoral dehumanizing situations. Family carers' knowledge is necessary to interpret patients' choices. Legal and professional care procedures should make more use of this knowledge.

Keywords:

• Autonomy
• Decision-making
• Dignity
• Ethics of Care
• Family Carers
• Involuntary Admission
• Korsakoff's syndrome

Acknowledgement

We are grateful to the journal's editors and reviewers for discussion and comments on previous versions.

Notes

1. In Dutch: Wet medisch wetenschappelijk onderzoek met mensen (WMO)