conventional claim made for first-person accounts of illness--a term loosely applied to present collection--is that such stories can teach professionals illness feels like as an experience of suffering and professional behavior looks like to those being treated. That claim can certainly be made for each of these books. authors have little interest in describing illness as pathology; instead they emphasize living with suffering, though that suffering varies as widely as illnesses involved. Physicians appear as major characters only in Evan Handler's memoir of leukemia (Time on Fire). They have walk-on roles in Michael Berube's story of his son Jamie, who lives with Down syndrome (Life As We Know It), in Tim Brookes's evocation of his mother's hospice care (Signs of Life), and in Nancy Mairs's story of a life with multiple sclerosis (Waist-High in World). Nurses and various therapists have a greater presence in Handler's, Berube's, and Brookes's stories, and this emphasis probably reflects most people's experiences. Only Handler's book is truly about medical treatment. But I want to advance stronger claim that in these books we can find beginnings of a yet-unarticulated ethic. Not an ethic of medicine and professional behavior, but an ethic of illness that addresses both professional provision of treatment and experience of being ill. This ethic may exemplify Australian philosopher and physician Paul Komesaroff calls Joining those who have objected to principlist formulations of ethics, Komesaroff writes, The job of clinician . . . cannot be formulated in terms of broad principles, bioethical or otherwise, but only as a series of practical tasks.[1] These tasks include settling upon the most appropriate way to approach patient, to talk with him, to allay his fears, and to establish common ground on which mutual decisions can be taken (p. 63). Thus instead of a principlist bioethics that is unable to provide an adequate account of day-today decision making in medicine, as a result of which it cannot provide any substantial guidance for medical practice (p. 65), Komesaroff calls for a microethics concerned with what happens in every interaction between every doctor and every patient (p. 68). A significant aspect of microethics is that it foregrounds reciprocal relations between medical workers and patients. Komesaroff recognizes that patients also are involved in a continuous flow of ethical decisions, including the degree of openness to doctor that is adopted, kind of information that is offered, and detail that is included... (p. 69). This dialogical inclusion of patient's ethical role is one aspect of Komesaroff's postmodernism. Komesaroff is equally postmodern in his refusal to seek any alternative principles to guide microethics. In clinical interactions all we can do is to say where we will start and how we will proceed, he writes; the rest--subject to requirements of structures--is up to interchange itself (p. 81). Yet in this closing statement Komesaroff does seem--inevitably, I believe--to reimport some concern with principles: even process of interchange has microethical structures that are subject to requirements. books under review allow us to begin to elaborate these requirements, which can be presented as quite different principles from those of bioethical principlism. Michael Berube's work explicitly presents an ethic of representation. He tells his son's story because Jamie, born in 1991 with Down syndrome, cannot yet represent himself, and Berube objects to terms in which broader culture represents him. Life As We Know It weaves together a personal narrative of parenthood, a political commentary on disability in contemporary America, and a philosophical inquiry into language (a central issue for Jamie, who is partially deaf), knowledge (how does Jamie know? …
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Oct 1, 2024
Seppe Segers + 1
Open Access