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Feeding tube risks for dementia patients often not discussed

Physicians many times don't inform family members that other interventions, such as hand-feeding, may improve quality of life.

By Kevin B. O’Reilly — Posted May 25, 2011

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The decision to insert a percutaneous endoscopic gastrostomy tube in a family member with advanced dementia is often made with inadequate discussion of the risks involved, said a study published May 3 in the Journal of the American Geriatrics Society.

Nearly 90% of patients with advanced dementia have problems feeding themselves, lose weight or choke on food. About 40% of these patients die within six months of developing eating problems, previous research shows.

But feeding tubes may not be the right response to the problem. Observational studies have found that feeding tubes do not prolong life, reduce aspiration pneumonia risk or improve quality of life for these patients.

And the tubes come with risks. Patients with advanced dementia who have tubes inserted often attempt to pull the tubes out, with the result that many patients are physically restrained or sedated. Feeding tubes also can become clogged and cause diarrhea.

Yet those risks are not usually discussed, said the study, a survey of 486 people whose next-of-kin died of dementia in nursing homes in five states (link).

Nearly 11% of the patients who died had feeding tubes inserted. Of the patients who received such tubes, 13.7% of the time their family members had no discussion with a physician about the intervention.

When there was discussion, it usually lasted less than 15 minutes, and fewer than half of family members said the risks of placing a feeding tube were explained.

"Patients should be offered choices about their medical care," said Joan M. Teno, MD, lead author of the study. "Our results suggest choices are not being offered in some cases, and when they are offered, they are not being offered in such a way as to let people know what the risks and benefits are."

Families of patients in this situation could benefit from a discussion of careful hand-feeding, said Dr. Teno, associate director of the Center for Gerontology and Health Care Research at the Warren Alpert Medical School of Brown University in Providence, R.I.

Patients who are hand-fed probably will continue to lose weight, but they may have a higher quality of life, Dr. Teno said. Only 22% of the family members were told about this option, the study said.

A fourth of the patients who received feeding tubes were physically restrained, and sedating medications were used in about 30% of cases, the study found. Nearly 40% of respondents said the tubes seemed to bother their loved ones.

"It is really important to spend the time and have a conversation ... before it comes a point of crisis," Dr. Teno said.

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