The Moral Challenge of Alzheimer Disease: Ethical Issues from Diagnosis to Dying

5 The Humane Goal: Enhancing the Well-being of Persons with Dementia

78 I The Humane Goal: Enhancing the Well-being of Persons with Dementia five This chapter is about what we should be doing for people with AD, focusing on the goal of enhanced well-being as an alternative to the protraction of morbidity and dying. Before clarifying this goal, however, I offer a critical prelude addressed to those philosophers and ethicists who view with skepticism our concern with enhanced well-being in dementia care because persons with dementia lack certain rationalistic features. Modernist Ethics: Caregivers Beware Our culture of family and professional caregiving for persons with AD suggests that we are, as a public, less hypercognitive than most philosophers. James Q. Wilson (1993) pits the public’s “morality versus philosophy” (2). Ordinary people live by shared moral sentiments that are more reliable than the pure rationalist’s deductions from abstract philosophical principles. Family caregivers across the land show us by example that people with AD count and are worthy of our care in order to assure their dignity. We care for the neediest because need is a basis of moral duty; the public weal is grounded in this moral sentiment. But, as Wilson argues, “modern philosophy, with some exceptions, represents a fundamental break with that tradition” (3). The analytic philosophers, such as A. J. Ayer, assert that our common moral sense of duty to the neediest is nothing but an unscientific verbal expression, and such emotional “ejaculations” have no objective validity. The French existentialists, such as Jean-Paul Sartre, offer a total personal relativism in ethics. The Marxists would justify using any means to achieve so-called utopian ends. The utilitarian pursuit of “the greatest good of the greatest number” seems easily to set aside duties to the neediest. There is a troubling articulation of the exclusion of the neediest in the writings of hypercognitive biomedical ethicists, who require that human beings fulfill rationalist “indicators of personhood” before they are considered to be of much moral significance and concern. In other words, the category of “need” is arrogantly displaced as the dominant source of moral obligation by the category of “personhood,” often de- fined in terms of rational capacities for “moral agency.” Nonpersons count less, if at all. Philosopher Michael Tooley (1983), for example, believes that it is intrinsically wrong to kill a being only if it can recall some of its past states and envisage a future for itself as well as have desires about that future . But the person with AD will arrive at a point where he or she is living more or less purely in the present, having lost the sense of connection between past, present, and future that makes planning possible. So, although Tooley was writing specifically of infanticide, which he accepted , can we not reasonably assume that he would have no qualms about killing people with moderate or advanced dementia? Tooley’s apologetic for the killing of infants on the basis that they do not measure up to “personhood” (which is in large part related to the capacity to plan for the future) could easily be applied to many people with dementia . Fortunately, most of us are not so exclusionary when it comes to loyal caring for those in need at the beginning and the end of life. Peter Singer, a utilitarian philosopher, also argues that “intellectually disabled humans” do not have a right to life in any full sense (1993, 101), and he can offer no compelling reasons for not killing them if they lack rationality and self-consciousness. He is clear that killing a baby (painlessly, of course) is preferable to killing a “person.” I interpret his writings to say that the nonvoluntary euthanasia (killing) of those who through “old age have permanently lost the capacity to understand the issue involved” (179) would be acceptable. Singer’s moral idealism with respect to nonhuman animals is obvious, but where does he stand with respect to the most deeply forgetful? Technically, persona in Latin refers to an actor’s mask. It has to do with the roles we play in the theater of life. The philosophers of personhood seem to state that if we do not wear the persona dictated by their attitudes as modern liberal intellectuals, we count less. Some very astute The Humane Goal I 79 philosophers, such as Bernard Williams (1973), have pointed out the varied definitions of personhood, and Williams is skeptical about...