The Tragedy of Alzheimer’s Disease
摘要
During the last 30 years, there has been a considerable increase in illness narratives. They have become increasingly important in medical ethics and have played a formative role in the development of person-centered care. These narratives are considered central to medical ethics because they help us understand how experiences of illness are contextually embedded. Experiences of illness are shaped by how the illness affects our life in broader terms, how it affects our family life, our social life, our ability to work, etc. This has significant consequences in medical ethics concerning how to care for and treat patients in a considerate manner. Detailed personal descriptions of what it can mean to live with an illness have brought forth ethical considerations that have largely been ignored from a general medical point of view. Despite the great importance of illness narratives, I want to suggest that there might be certain problems in the scope of the experiences conveyed in this literature. Illness biographies are often written by people from a certain social and economic background. They lead economically stable lives and live in a context in which writing about their experiences is a usual form of self-expression that is both appreciated and endorsed. People who live less economically stable lives may be less prone to write about their lives and may have greater difficulties in getting published. One question I want to address is whether there is a risk that this leads to certain questions falling outside the general scope of illness narratives. Is there a risk that the lack of certain voices in illness narratives may create a too-unitary conception of experiences of illness? Is there a risk that the lack of certain voices creates the impression that experiences of illness are basically “equal”? Another connected question I want to address is whether there is a risk that illness narratives create an individualistic conception of the meaning of illness where societal aspects of illness do not get enough attention.