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SEVEN: Autonomy and the Lived Body in Cases of Severe Dementia
- Johns Hopkins University Press
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mc h a t e r s e v e n Autonomy and the Lived Body in Cases of Severe Dementia Wim J. M. Dekkers, M.D., Ph.D. In many countries, physical restraints and other coercive measures are daily practice in the care for persons with dementia. Mechanical measures that must guarantee the safety of the patient and of fellow patients are frequently taken, and these necessarily restrict the freedom of the patient. Psychogeriatric institutions also experience another common problem: having to decide whether or not to start, or continue, tube feeding of patients with dementia . In both situations, patients often resist these interventions, using verbal protest, agitated behavior, or bodily defensive movement. • Mr. M., aged seventy-two, with unspecified dementia, was admitted to a nursing home when his wife was no longer able to care for him. Mr. M. is frequently upset after his wife’s visits, and when she leaves he often strikes out at the staff. As a result, he is placed in a geriatric chair, and one day his wife found the chair tied to a railing near the nurses’ station. A staff member explained that this is necessary to keep Mr. M. from “wheeling around” (Strumpf & Evans, 1991). • Mrs. G., a ninety-year-old with AD, has been a resident of a nursing home for thirteen years. Recently she has refused to eat, and for three years her wrists have been restrained to prevent her from pulling out a nasogastric tube. A decision to place a gastrostomy tube is now pending (Strumpf & Evans, 1991). Situations like these raise two kinds of problems. First, there is the practical moral problem of what to do. Must verbal utterances, agitational behavior, and defensive movements be disregarded or overridden in the best interest of the patient or others? How can coercive measures be justified when they are obviously against the will of the patient? Here it is worth emphasizing that persons with advanced dementia are vulnerable to medicalized dying with a nasogastric tube or percutaneous endoscopic gastrostomy. Post writes:“If it is the wisdom of nature that people with profound dementia forget how to swallow, if it was wise when Plato wrote that to the dying food ‘appears sour and is so,’ I wonder about our technological audacity and readiness to‘play God’by inserting tubes”(Post,1995, p. 7). Is it true that we“play God”if we start tube feeding against the obvious will of the patient? Second, there is the philosophical problem of how agitational behavior and defensive movements must be understood. Are bodily defensive movements to be explained from a purely biomedical perspective as automatic reflex movements that can be ignored? Or must they be interpreted as a meaningful bodily expression that may tell us something about the person’s wishes? Another most important theoretical question is whether persons with severe dementia actually have wishes and desires. And to widen the scope even further, what, in such situations , does it mean to adhere to the ideal of taking persons with (severe) dementia seriously and to treat them with respect and dignity? This chapter focuses primarily on the second type of question, though it also presents some practical consequences that may be derived from these theoretical considerations. The chapter’s first aim is to describe and interpret bodily defensive movements of persons with severe dementia. The search here for an interpretation of the concepts of autonomy and the human body results in one that in many ways differs from current interpretations. Especially when the concept of autonomy is dealt with, I go off the beaten track. The second aim of this chapter is philosophically to underpin the often intuitively felt hesitation and resistance to prolong the life of persons with severe dementia by tube feeding them. First, before focusing on autonomy and the lived body, I describe what it is to be severely demented. 116 Philosophical and Theological Explorations [34.230.66.177] Project MUSE (2024-03-19 05:47 GMT) m What Is It Like to Have Severe Dementia? Generally, dementia—for example, Alzheimer disease—is a long-lasting and gradual process. While the body of the person with dementia often remains strong for a number of years, mental capacities as well as the accumulated competencies and memories of a lifetime gradually slip away. People with advanced dementia generally do still have fears and longings, even if these are limited to the immediate present, but in cases of severe dementia, the self...