Family members grappling with the decision to allow a feeding tube for a relative with advanced dementia will find little comfort from a new review of evidence.
Poor food intake is common in individuals with dementia for a variety of reasons. In advanced dementia, health care providers might intervene by feeding patients artificially, usually by inserting a feeding tube through the stomach. This decision is emotional, controversial and influenced by complex ethical issues.
But do feeding tubes actually help people with degenerative dementia? In a new Cochrane review from London, doctors searched for evidence that this intervention was beneficial.
“We found that there is no research evidence that tube feeding prolongs survival or improves the quality of life for people with advanced dementia,” said lead author Elizabeth Sampson, M.D. “In fact, some studies suggest that tube feeding may have an effect opposite to the desired and actually increase mortality, morbidity and reduce quality of life.”
The review appears in the current issue of The Cochrane Library. Systematic reviews draw evidence-based conclusions about medical practice after considering both the content and quality of existing trials on a topic.
At first glance, it appears counterintuitive that individuals fail to benefit from tube feeding, but the way that the body utilizes food is complex, Sampson said. With some forms of dementia, the body might be unable to metabolize food properly.
Especially worrisome for families is the pain typically associated with prolonged hunger and thirst.
“In a study with patients terminally ill with advanced cancer and unable to eat, however, few experienced painful feelings of hunger and thirst,” Sampson said. “If they did, this pain was alleviated by simple measures, such as pain relief or small sips of water. Compassionate nursing and medical care — similar to that which underlies the philosophy of the hospice movement — can alleviate a great deal of suffering and should be available to people with dementia, too.”
Sampson and colleagues are at the Marie Curie Palliative Care Research Unit, Royal Free and University College Medical School.
This research encompassed a review of 452 studies in seven health care databases, five from the United States. Overall, the studies included 1821 people, 409 of whom received some form of tube feeding and 1467 who did not. The researchers found no randomized controlled studies, considered the gold standard of studies.
“Just because we found insufficient evidence of benefit does not mean that for some individuals with advanced dementia, tube feeding is the wrong decision,” Sampson said. “Each case needs to be considered individually. We would hope that family members will feel better informed about the pros and cons of tube feeding in persons with advanced dementia because of this paper.”
Artificially feeding individuals with dementia is a relatively new phenomenon that evolved after development of the percutaneous endoscopic gastrostomy tube, or feeding PEG, in the early 1980s, said Stephen Post, Ph.D., a professor of preventive medicine at Stony Brook University. Their intent was to nourish seriously ill children until they got well, but by 1985, PEGs became widely used as a cost-saving measure in nursing homes, which lacked sufficient staff to do assisted oral feedings.
“As Dr. Sampson found, there is no evidence that the feeding tube benefits patients with advanced dementia,” Post said. “Indeed, as she details in this paper, there are all sorts of considerations for not using feeding PEGs. The most serious reason, perhaps, is physical restraint, which is terrible. One study shows, in fact, that 71 percent of persons with advanced dementia, who receive feeding tubes, are physically restrained.”
It is important to realize, he adds, that the gastrointestinal system of patients close to death often shuts down and a feeding tube can cause considerable suffering.
The choice is not either a feeding PEG or nothing, said Post, who is also president of the Institute for Research on Unlimited Love, and the author of a book on moral issues in Alzheimer’s disease. He said there is a third option that people have been using since the beginning of time: assisted oral feeding.
“My grandmother had Alzheimer’s disease in the 1970s and I regularly helped feed her soft foods like applesauce and gave her something to drink.”
Post said the most important thing a loved one can do is to routinely stop by the nursing home on the way to or from work, and spend a half an hour doing assisted oral feeding. There is also an emotional connectedness that goes on, he believes, and countless benefits of giving for the giver.
“The most humane thing is assisted oral feeding,” he said. “There is almost a sacred quality to it in my mind.”
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