Villains and victims: Normative settings in the home care of the terminally ill.

The article analyses how the everyday life of terminally ill people nursed at home is influenced by construction processes that allocate 'victim' and 'villain' roles to the dying and their relatives. The article is based on two selected case studies of the dying, their relatives and the district nurses caring for them. By enlisting theory on the construction of social problems, the article reflects how we construct normative settings for acceptable behaviour on the part of dying people and their relatives. Dying people have to behave according to preconceived standards for a 'good family member,' e.g., they should not be too demanding; they have to cooperate on terms set by healthcare professionals by accepting their interventions. For relatives, the normative settings dictate that they have to accept the autonomy of the dying person; they must be modest and humble, obliging towards healthcare professionals and trusting that the professionals are doing the right thing. Such settings stand in complete contrast to the recent development in the Danish healthcare system, which stresses the importance of acknowledging autonomy, integrity and user involvement.