The Autonomy Experience of Patients in Palliative Care

Abstract

Western society places great value on the expression of autonomy. Beginning in childhood, individuals are encouraged to walk by themselves, express their ideas, make their own decisions, perform duties, and plan their own future. Human nature drives the person to achieve and to take responsibility for their actions. Consequently, identity and self-esteem may be affected when someone is forced to depend on others as a result of failing health. This study aims to describe the experience of autonomy from the viewpoint of persons in palliative care. It was based on the phenomenological approach outlined by Colaizzi. Data were collected using semistructured interviews. Their analysis made it possible to identify six essential elements of the autonomy experience shared by all participants: (1) affirmation of identity as a human being, (2) ability to act by oneself, (3) generation of positive impacts on well-being, (4) experience of difficult and sometimes painful feelings, (5) altered relationships, and (6) adoption of different attitudes with regard to the future. The research shows that while autonomy is associated with personal identity and being independent, it also indicates it is experienced, paradoxically, with others. Finally, despite efforts to support future planning, autonomy is above all experienced in the present moment.