Ethics
The Standard of Caring: Why Do We Still Use Feeding Tubes in Patients With Advanced Dementia?

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A consensus among geriatricians, ethicists, and neurologists supports a palliative approach to the care of individuals with late-stage dementia. But ten years after the publication of the first large study demonstrating the lack of efficacy of percutaneous endoscopic gastrostomy (PEG) tubes in prolonging life for patients with advanced dementia, and seven years after the appearance of two articles in major medical journals arguing that tube feeding should no longer be the standard of care for individuals with advanced dementia, gastrostomy tubes remain commonplace in this population. One overlooked reason that many families and physicians continue to opt for artificial nutrition is that the case for feeding tubes is a moral one and not a scientific one. What may be at issue for families is how best to demonstrate caring, and caring is not readily amenable to empirical study. A better approach to family members who want feeding tubes for the demented is to acknowledge the symbolic value of nutrition for them and to seek an alternative means of satisfying the need to feed.

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Factors Promoting Tube-Feeding

According to the most recent statistics available, the rate of feeding tube use among patients with advanced dementia living in nursing homes varies widely from state to state, ranging from a low of 7% in Maine to a high of 40% in Mississippi.9 It has fallen somewhat from the national average of 34% reported in 2003,10 although the decline is not found in minority populations.11 A large literature has developed that seeks to explain the barriers to change. Several articles address patient

What Matters to Patients and Families Near the End of Life

What matters to patients near the end of life is not uniformly the same as what physicians identify as important. Patients want their symptoms to be controlled, they wish to remain in control, they are concerned about being a burden to their loved ones, and, what is most readily extrapolated to an individual with dementia, they wish to be treated respectfully.17 Cognitively intact dying patients are able to articulate that their dignity is upheld when health care providers affirm their

Feeding Tubes as Caring

Quantitative analysis can provide some help in determining a standard of caring. Investigators have designed instruments to measure pain in advanced dementia21 as well as scales to assess multiple dimensions of suffering.22 These tools can in principle help ascertain whether patients with advanced dementia suffer in the absence of artificial nutrition and hydration. One study of nursing home residents with severe cognitive impairment and pneumonia found that symptoms of discomfort diminished as

A Moral Response to the Feeding Dilemma

A better approach to family members who want feeding tubes for the demented is to acknowledge the symbolic value of nutrition for them and to seek an alternative means of satisfying the need to feed. Hand feeding is one strategy, and when the individual with dementia will eat if fed—albeit typically only very slowly, then this is the approach of choice. It is very labor-intensive and difficult to implement in the nursing home, where many individuals with advanced dementia live, but with a

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    The authors have no conflicts of interest pertaining to this article.

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