Terminating Life‐Sustaining Treatment of the Demented

Some subjects in ethics elicit a far greater degree of emotional discomfort than others. It is not the delicacy or complexity of the subject as such that seems to be the problem. It is, instead a tacit recognition that, try as we might, it is especially hard to disentangle our personal response from the issues themselves. And this makes it especially hard to avoid self-deception and self-interest in our analysis. Terminating life-sustaining treatment for demented patients is such an issue. Dementia is universally feared, more so than almost any other disease. Few of us can tolerate the thought that we might become its victim. Even if we can bring love and devotion to the care of those with dementia, they can in turn elicit in us the fear that we might someday be ourselves so afflicted, and they can incite a sense of loathing and horror, usually despite ourselves. We cannot easily distinguish our own feelings about the condition from what is the actual good of the patient. The harder it is for us to imagine life as tolerable in such circumstances, the harder it will be to determine what is beneficial for the patient. This same troubling dimension will, analogously, almost surely begin playing itself out in the years to come on the social and economic level, as a combination of increased numbers and likely higher costs for the care of those afflicted with dementia becomes a more explicit agenda item for resource allocation, Will society show the same kind of ambivalence, self-questioning, and anguish felt by many individuals as it further develops policies and spending patterns? If so, how will it incline in its values and predilections, with increased generosity or discreet withdrawal? The general question I want to pursue is this: under what circumstances should life-sustaining treatment for dementia patients be ended and the patients allowed to die? The more specific, troubling, question is: ought the fact of dementia make a difference in our decision, distinguishing it from other termination situations? These questions would have been much easier to deal with ten or fifteen Years ago. They are harder now for three reasons--reasons which, vexingly enough, move in different, conflicting directions. The first reason is that recent research on Alzheimer disease is beginning to show that much more can be done for its sufferers than was previously possible and that a viable, even if crippled, self may endure far later into the disease process than was earlier believed. The second reason is that new sensibilities about disabled populations have emerged over the past few decades that have alerted us to the possibility of stigmatizing and demeaning the demented, thus worsening their situation. The third reason is that, one way or another, health care resources will become more limited in the future, and the explicit, open rationing of health care more certain; dementia is not likely, nor should it be spared from scrutiny in that process. It would be ideal to develop a way of thinking about Alzheimer that managed to take on all three of these problems simultaneously despite their potential conflict, seeing if they can be dealt with in a way that is integrated and coherent. I will initially sketch a context to help situate the care of dementia patients and the termination of their treatment Then I will move on to develop some criteria to make termination decisions. A Context for Analysis The pertinent context here is threefold: (1) our knowledge of the inner life, and selfhood, of those suffering from dementia (by which I will primarily mean Alzheimer disease); (2) the messages, symbolic and literal, about dementia that could be conveyed to society by alternative kinds of policies and practices; and (3) the economic considerations involved in making decisions about the good of individual patients. Dementia and the Self. Two major problems need to be noted. One of them, to which I will not devote much attention, bears on the place and force of advance directives in the care of the demented. …