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TWELVE: Saying No to Patients with Alzheimer Disease: Rethinking Relations among Personhood, Autonomy, and World
- Johns Hopkins University Press
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mc h a t e r t w e l v e Saying No to Patients with Alzheimer Disease Rethinking Relations among Personhood, Autonomy, and World Franz J. Illhardt, D.D., Ph.D. During a geriatric symposium at Freiburg University, a visiting theologian introduced his lecture with the remark that he liked to be invited to Freiburg because of the chance to visit his elderly father, who had dementia and lived in a nursing home nearby. These social contacts were highly important for the dignity of his father because a person with dementia has only the dignity we give him in social contact (Ritschl, 1993).We should not forget that dignity is not, or at least not only, a trait of the person as an “object” of care, but a trait of the caregiver as well. By way of comparison, a veterinarian alleviating the pain of a dog acts in accordance with human dignity, not the dog’s dignity, because the vet realizes his own human character by relieving the pain. Some argue that the vet’s actions should be undertaken to honor the dog’s dignity, but I propose that it is for the veterinarian’s own dignity that the action should be undertaken. Therefore , the most important issue is not whether we attribute dignity to a patient with Alzheimer disease (AD). When we do not care for these poor persons appropriately , we lose our own dignity (Thomasma, 1986). These facts present crucial questions for our society in regard to AD: the late onset of AD after fifty years of age; the increasing number of afflicted persons (Larsson, 1993); the average duration of patients’ lives (6.1 years for patients at home or in ordinary nursing homes and 8.2 years for those in special care units (Lynn et al., 1999). The increasing span of life, and contemporaneously the threat of dementia, demands solutions for the maintenance and enhancement of the quality of life. Further, “societies are just beginning to define and deal with the challenges” (Lynn et al., 1999, p. 271); in other words, societies are not yet familiar with solving these problems. In the first phases (neurological impairment) of AD, communication is, of course, possible, but the worse the dementia becomes the more difficult each kind of controlled action becomes. The word interaction suggests that both the patient and the caregiver are acting. Can the interaction of an AD patient and a healthy person be balanced? Interaction means that actions are balanced and part of a network—the one is the precondition of the other. Interaction includes our preferences, value judgements, and priorities; therefore the first step is never to begin with hard and set rules. A journalist meeting people with dementia for the first time wrote, “I was angry about the inconceivable. I could not cope with that. Until I learned that they laughed when I laughed,that they were pleased when I was pleased,and that their babbling was not shocking, but their last possibility of expression” (Jürgs, 2001, p. 275). Thus, to measure autonomy as an inner characteristic is not the most important task of caring for AD patients; instead, it is to support the interaction that makes their autonomy possible. m Saying No as a Symbol of Setting Limits Caregivers of patients with AD often face the conflict that they must stop the patient from doing something that appears to be silly, such as knocking, moving around restlessly, and so forth. Professional caregivers would say no only when the strange behavior is a burden to others. The dilemma arises when there is risk for the AD patient herself. For example, a patient with AD trying to leave the chair while the nurse makes up her bed could, without support and control, fall and break legs, arms, or a hip. Should the nurse take this risk or should she set limits? She may decide in the best interest of the patient, but in doing so she is very likely to limit the patient’s freedom. In weighing risks and benefits, the caregiver must recognize that for the AD patient, moving is one of the most important things in the world. The patient will never understand the benefit of this no since it limits her expression. Her development will decrease, not increase. Further, the argument that the caregiver’s Saying No to Patients with Alzheimer Disease 201 [54.226.25.246] Project MUSE (2024-03-19 14:36...