Pictures of persons and the good of hospice care.

What I will call "distributive models" of health care justice cannot supply a rationale for expanded access to hospice care. These models fail because they are based on two misleading pictures: the picture of the moral agent, who resembles few of us as we lie dying and doesn't look much like the loved ones who care for us either, and the picture of the good to be distributed, which seriously misrepresents the kind of good that hospice care consists in. The Picture of the Person The distributive model of justice is predicated on a picture of persons who compete for their share of life's goods by planning a course for their lives and then bringing the plan to fruition through hard work and self-discipline. Norman Daniels's argument for regarding health care as one of the basic social goods, for example, is that health care prevents, maintains, restores, or compensates for departures from normal species functioning, and that normal species functioning is an important component of the opportunity range--the array of life plans--open to individuals in a society. Daniels's argument, in effect, is that because ill health or disability threatens people's ability to live according to the plans they have set for themselves, health care is owed to everyone as a matter of social justice. (1) Margaret Urban Walker has recently contended that the normative assumption that people have "life plans" is found in a cultural theme with a long history--"the idea of each individual life as a career." The "career self" who lives out this life creates a plan that permits him to be economically and socially productive. He sets himself a course of progressive achievement, which he navigates by being fit, industrious, law-abiding, and, above all, self-disciplined. "It is a picture," remarks Walker, "of autonomy as energetic self-superintendence with a consistent track record over time to show for it." (2) The picture of the career self, however, far from being a neutral representation of persons as such, is a picture of only some people's lives, and even then it is not a particularly accurate picture, because it leaves out the times in the life trajectory when the career self could not yet, or can no longer, pursue the projects or goods that give his life meaning. The career self was never an option for those who are poor, chronically ill, severely disabled, or the object of others' domination or control. And it was never intended for women. Women's task was to play the supporting roles of homemaker, domestic servant, and care giver that both freed and compelled men to become career selves. Most importantly for present purposes, the career self is not an option for the dying person who is no longer economically and socially productive. "Life plans" aren't doing the right kind of moral work here. At best, they are irrelevant, and at worst, the thought that they are required for personhood gets actively in the way of any useful analysis of access to hospice care. The Picture of the Good The language of "delivery" and "market," and the examples running through the literature of cars, potato chips, or, in Daniels's essay, coffee, suggests that the picture of the goods underlying distributive models of justice is that of commodities on a shelf, waiting to be parceled out equitably. To some extent, the goods of hospice are indeed the material goods the distributive paradigm represents them to be. There are drugs on the "commodity shelf"--likely a hospital bed, perhaps a supplemental oxygen machine, a morphine pump, other paraphernalia of the sickroom. And there are commodity-like services provided by paid professionals. But these, presumably, are not the only "goods" that the dying have in mind when they express the wish to be cared for by members of their family. I suspect that they are thinking instead of the goods of relationship, not commodities on a shelf. When a son rather than a home health aide rubs his dying mother's back, he is doing something more than preventing the formation of decubitous ulcers--he is also conveying his love and concern. …