Dementia-near-death and "life itself"

Abstract

This chapter is about the cultural work that dementia does, the sociomedical uses to which it is put in the American hospital at the end of life. I suggest that dementia works there in three ways: as a rationale for facilitating death, as a contested feature of what matters about the patient's identity, and as a moralclinical designation of value when a frail life is perceived to hang in the balance. In performing this multiplex work, dementia makes manifest one aspect of the ethics and politics of life itself in the negotiations it elicits about "quality of life," "loss of personhood" and "diminishing life"; in debates about what constitutes "normal" and "natural" decline toward death; and in cultural ambivalence about whether the end of "meaningful life" is reason enough for death.1 Dementia has entered the domain of choice; to confront dementia is to be faced with options for maximizing function, minimizing suffering, and organizing care. Decision making is inevitable. Moreover, dementia, as a mutable category of knowledge and cultural form, obscures the distinction between life and death. In its various stages- early, moderate, advanced, severe, and end-stage-dementia is a condition both of death-in-life and of life-in-death. This ambiguity becomes more profound as the disease progresses, and it lies at the heart of the anguish about what to do. This ambiguity is what makes dementia so compelling for families; so unnerving in the context of the cultural importance of memory, control, and reason; and so unsettling to the existing order of things. As with other medical sites in which productive technologies are scrutinized by ethnographers, dementia-near-death brings together biomedical and socioeconomic features of contemporary American health-care in novel ways to permit and create a further remapping of the notions of life, person, and value.2 Specifically, the normalization of clinical techniques to control the timing of death, the ubiquitous structural imperative of patient and family decision making, quandaries about the relation of the person to the body when disease masks or destroys normal consciousness, disputes about the goals of medicine when the end of life is imminent, and the fact that clinical interventions are possible up to the moment of death all converge at this site. That convergence has multiple effects. For example, a new kind of patient population is produced. The ethics of medical and familial responsibility are further complicated. Canguilhem's prediction that "the science of life no longer resembles a portrait of life" (1994, 317) is a useful starting point for thinking about dementia as a form of cultural production and, more broadly, for adding to an anthropology of "life itself." In their histories of the modern life sciences, Canguilhem and Michel Foucault point out that the concept of life, as a specific object of knowledge, to be known through the modern biological sciences, did not exist until the end of the nineteenth century. Foucault writes, "Historians want to write histories of biology in the nineteenth century; but they do not realize that biology did not exist then, and that the pattern of knowledge that has been familiar to us for a hundred and fifty years is not valid for a previous period. And that if biology was unknown, there was a very simple reason for it: that life itself did not exist. All that existed was living beings, which were viewed through a grid of knowledge constituted by natural history" (1970, 128; italics added). The idea that life as a process, mechanism, and structure could be studied (and perhaps ultimately understood) owes its emergence to the rise of theories of evolution and owes its expansion to concepts formed through the sciences, first physiology, and more recently molecular biology and genetics (Canguilhem 1994; Franklin 1995). Importantly, by the mid- to late twentieth century, knowledge of the living body and the forms and structures that constitute life, especially DNA or the genetic code, "became intrinsically linked to interventions that transformed those living bodies" (Rose 2001). Life, health, illness categories, and death were objects to be acted on via the instrumentalization techniques that the biological sciences and clinical medicine offered (Franklin 2000; Rabinow 1996, 2000). Here I explore how cultural meanings about aging, senescence, dementing illness, and the "natural" life span are inscribed in biological materiality and the biomedical techniques that enable us to know what life is. The biological and biomedical, in turn, shape understandings of how the person with dementia is bodily (that is, fundamentally) constituted and provide moral and socioeconomic frames for the range of interventions. Uttered today as a gloss for any neurological condition that slowly or rapidly destroys cognition, memory, reflexivity, and expressive capacity, dementia is a modern form of life itself, in the sense that biomedical and related apparatuses are brought to bear on a diag nosed condition, transforming "living beings" into victims, patients, and research subjects with a degenerative brain disease and rationalizing a host of management strategies.