Caring for the dying: advocacy or paternalism

Moral dilemmas in the care of a dying person ideally should be decided in the context of that person's own freely determined understanding of death. At the philosophical, the clinical, and the personal levels, the primal question of how to understand death must be addressed before decisions are made concerning much ethical problems as euthanasia. Philosophers and practitioners who fail to do this are guilty of an a priori paternalism toward the dying, on whom their conclusions will be imposed. Until we have determined, together with the person involved, the way in which that person wants to view his or her death, any prior ethical judgment not only is presumptuous but infringes on the most basic freedom, that of determining the meaning that one's own experience shall have. The role of advocacy is an alternative to the traditional paternalism toward the dying. The essay attempts to (a) develop the distinctions among paternalism, consumerism, and advocacy; (b) propose a concept of advocacy as the assistance to the dying in freely determining how to understand their dying and death; (c) describe three of the views of death (naturalistic, religious, and existentialist) that need to be understood by those who assist the dying in exercising their freedom of self-determination.