Dementia care in an ethical perspective : an exploratory study of caregivers' experiences of ethical conflicts when feeding severely demented patients

Sammanfattning: The aim of this study was to explore how caregivers caring for severely demented patients experience ethical conflict situations. Feeding patients in a late state of dementia was chosen as focus. Special attention was paid to analyses of the caregivers' experiences with regard to their feelings, use of force, interpretations of the patients' behaviour and their ethical reasoning.The study was carried out in five separate parts, presented as five papers. A phenomenological - hermeneutic approach was consistent. Personal interviews, a projective defence mechanism test, the Meta Contrast Technique and an analysis of patient/caregiver behaviour as shown in video taped feeding sessions were the methods used.Study participants were forty-one caregivers in psychogeriatric care, registered nurses, licensed practical nurses and nurses' assistants.The result indicated that, when facing ethical decisions the caregivers were caught in a double bind conflict due to the contradicting ethical demands "Keep the patient alive!" and "Don't cause the patient suffering!". The difficulty to interpret what the patients experienced and the impossibility to know for sure what actions would be right or wrong were sources of anxiety. They defined force feeding individually, yet a pattern was found. Some caregivers defined force feeding according to the amount of persuasiveness or violence they had to perform. Some regarded force feeding from a patient wish perspective. A majority combined the two dimensions.The caregivers' ethical reasoning showed that their decision making was to be regarded as a process grounded on ethical rules. Interdependence in the relation caregiver/patient made them develop their reasoning in a direction of existential reasoning.