An extensive literature has evolved over the past several years addressing the long term use of artificial enteral feeding in patients with advanced dementia, including advanced Alzheimer’s dementia, a terminal disorder. Survival is the variable most often measured. Thomas Finucane reviewed fifteen studies quantifying mortality after

feeding tube placement in patients with neurogenic (including dementia) and mixed disorders. Nearly all of these studies failed to identify a survival benefit afforded by

feeding tube placement. Moreover, up to 50 percent of advanced dementia patients may die within a month of PEG placement. Finucane also reviewed available evidence about other outcome parameters: prevention of aspiration pneumonia, prevention of the consequences of malnutrition, prevention or improvement of decubitus ulcers, prevention of other infections, improvement of functional status, and improvement

of patient comfort. In this review of the literature from 1966 through March 1999, there were no reports documenting improvement in any of these outcomes with tube

feeding An extensive literature has evolved over the past several years addressing the long term use of artificial enteral feeding in patients with advanced dementia, including advanced Alzheimer’s dementia, a terminal disorder. Survival is the variable most often measured. Thomas Finucane reviewed fifteen studies quantifying mortality after

feeding tube placement in patients with neurogenic (including dementia) and mixed disorders. Nearly all of these studies failed to identify a survival benefit afforded by

feeding tube placement. Moreover, up to 50 percent of advanced dementia patients may die within a month of PEG placement.

What does it mean to call something a genetic trait or disease? Clearly, at least part of that judgment rests on some kind of causal assessment. If a disease is genetic, then it is caused by one or more of an organism’s genes. Indeed, this seems to fit a more general concept of disease, in which the causal basis of disease is incorporated into our nosologies. As Richard Hull has explained: In its efforts to understand, control, and avoid disease, modern medicine has incorporated into the very identification of a disease the notion of the cause of the syndrome. This permits the individuation of similar syndromes with distinct causes into different diseases. (p. 61) There is a fairly obvious problem with this as a way of distinguishing between genetic and epigenetic diseases. That is because there are genetic and nongenetic factors which are causally relevant to every trait, a fact recognized by virtually all commentators on the concept of genetic disease (see Gifford; Hull, 1979). So the real issue in deciding that something is a genetic disease, is whether the causal factors which are genetic are the most important causes. How do we decide whether genetic factors or environmental factors are more important in the production of various diseases? In response to the selection problem, a number of solutions have been proposed. These can be grouped into a few major categories.

This seems to exactly capture at least something important about society’s concept of genetic disease. It can be put perhaps more precisely in terms of covariance. When some trait is identified as genetic, it can be argued that (in that population) the covariance of the trait with some genetic factor(s) is greater than the covariance of the trait with other (nongenetic) factors. This solves the selection problem neatly by allowing us to pick out which causal factors are irrelevant (the ones which are fixed) and highlight the important ones (the ones that make the difference). In one of the canonical examples of causality, one is inclined to say that the lighting of a match (under normal circumstances) was the cause of the fire, while the presence of oxygen (while a contributing causal factor) was not. In contrast, in an environment where fire was normally present and oxygen was not, one might well pick out the (unusual) presence of oxygen as the cause of a fire.

There are several advantages to this approach to the selection problem. First, it corresponds to the use of analysis of variance that is used by biologists to measure the causal contribution of hereditary and environmental factors in a population. Second, it is capable of clear explication. Third, it has at least some intuitive support. However, this account seems to conflict with common usage in cases where pathogens typically identified as the cause of disease are nearly ubiquitous (so that, for example, genetic factors may make the difference between which people exposed to the pathogen

become ill). In spite of its advantages, the statistical approach fails to capture all of the myriad uses of the concept of genetic disease. Another approach has been developed from the way the most important causal factor in an explanation is picked out.

While beneficence is important to many philosophical and religious systems of ethics, it is central to the health professions. The Hippocratic Oath clearly states that the physician’s actions are “for the benefit of the sick” (see Appendix for this and other codes and oaths). The Declaration of Geneva begins with a pledge to “consecrate” one’s life to “the service of humanity.” The 1980 “Principles” of the American Medical Association (AMA) opens with the declaration that these principles are established “primarily for the benefit of the patient.” The International Code for Nurses devised in 1973 begins with a broad-ranging assertion of beneficence. The “fundamental” responsibility of the nurse, it states, is to promote and restore health, alleviate suffering, and prevent illness. While duties to specific persons are recognized, the obligation to perform beneficent actions is seen as universal, because the need for nursing services is universal.

The U.S. Code for Nurses of 1976 differs from all physician codes in recognizing that services not only should promote good but also should be guided by the values of

those served. The first principle in this formulation asserts the “self-determination of clients.” As noted above, selfdetermination, or autonomy, is frequently seen as a limiting factor in gauging the extent of beneficence, yet this factor is rarely mentioned in the ethical formulations of health professionals. For example, the practice of soliciting consent from patients was evident in medical practices in the United States in the eighteenth century. Yet these solicitations were not commensurate with today’s notion of informed consent. Consent was sought in the eighteenth century primarily to enhance therapy rather than to encourage independent decision making by patients (Faden et al.). Jay Katz presses this point by asserting that consent is largely “alien” to

medical thinking, which prefers “custody” over “liberty.”

How beneficence is put into practice depends on how it is modified by other principles. Especially important in this regard is respect for autonomy or self-determination. Another way to put this is to ask whose notion of good will be

definitive. Respect for autonomy means that good will be defined by the recipient of the action rather than the agent. Beneficence not so defined leads to paternalism, in which the beneficent actor overrides or ignores the recipient’s ideas of good and imposes his or her own. The history of medical ethics is largely (but not entirely) a history of paternalistic beneficence. In the mid-twentieth century, consistent challenges arose to beneficent paternalism through assertions of patient rights. Defenders of simple paternalism in healthcare relationships are now rare, and most ethicists would agree with Erich Loewy that paternalistic actions generally represent a “caricature” rather than a natural extension of beneficence. Autonomy as a moral principle is historically rooted in freedom as a political principle, to which John Locke’s Second Treatise of Government (1690) gave definitive expression. Freedom, Locke asserted, is not license “but a liberty to dispose, and order as he lists, his person, actions, possessions, and his whole property, within the allowance of those laws under which he is, and therein not to be subject to the arbitrary rule of another, but freely follow his own” (p. 32). The eighteenth-century monument to autonomy is the work of the German philosopher Immanuel Kant. Whereas Locke was concerned to protect individuals from the power of the state, Kant focused on freedom of the will. His “practical imperative” requires that others be treated as ends in themselves and never only as a means. For Kant this respect for the moral freedom of others was grounded in a recognition of their rational nature. In bioethics this raises the difficult issue of when and to what extent the rational capacities of patients are compromised and in which cases autonomy should give way to medical beneficence. The grounds for limiting beneficence through respect

for autonomy were most powerfully stated by John Stuart Mill. In On Liberty (first published in 1859) he cautioned against supposing that the principle of liberty necessitates a “selfish indifference.” Indeed, he asserted, “there is need of a great increase of disinterested exertion to promote the good of others.” But, he continued, “disinterested benevolence can find other instruments to persuade people to their good than whips and scourges, either of the literal or of the metaphorical sort”

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