Dr. Joan M. Teno of Brown University and her colleagues found that hundreds of patients who had specified, in writing, that they did not want a feeding tube received one anyhow.

Reuters Health

February 12, 2010

Whether or not a person with advanced dementia winds up with a feeding tube inserted down their throat may have more to do with economic concerns than his or her wishes, suggests a new study out in JAMA (Journal of the American Medical Association).

In fact, Dr. Joan M. Teno of Brown University in Providence, Rhode Island, and her colleagues found that hundreds of patients who had specified, in writing, that they did not want a feeding tube received one anyhow.

Feeding tubes don't extend survival for people with advanced dementia who can no longer swallow, and provide no other apparent benefits to these patients, according to two reviews of the medical literature, Teno and her team note in their report.

Tube feeding can also cause harm, the researcher added in an interview; demented patients who are bothered by the tube and try to remove it may be physically restrained or placed on heavily sedating drugs.

Data aside, notes Dr. Timothy Buchman, director of the Emory Center for Critical Care in Atlanta, family members of these patients often decide that they do want to have feeding tubes inserted once a patient can no longer feed themselves. "Family members I think quite understandably will often say, 'yes I think I would like this very simple basic human need met,'" he says.

Up to a third of nursing home patients with advanced dementia have a feeding tube, Teno and her colleagues note in their article. In two-thirds of these cases, the tube was inserted while a patient was in the hospital.

To investigate what factors might influence whether or not a hospital would use feeding tubes in people with advanced dementia, Teno's team looked at 2000-2007 records for nearly 2,800 hospitals, all of which had admitted at least 30 patients who were 66 or older, had advanced dementia, and were living in nursing homes. Their analysis included Medicare claims for 163,000 patients and nearly 281,000 hospital admissions.

Twelve percent of the hospitals didn't insert a feeding tube in a single patient with advanced dementia throughout the eight-year study period, the researchers found. But at one quarter of the hospitals, patients had a 1 in 10 chance of feeding tube insertion; hospitals with the highest rate of feeding tube use inserted them nearly 40 percent of the time.

For-profit hospitals were more likely to use feeding tubes, as were larger hospitals and those with the highest level of intensive care unit use for patients in their last six months of life.

Recognition is growing that dementia is a terminal illness that affects the body as well as the mind, Teno told Reuters Health. And when a patient with dementia begins having trouble eating, she said, this indicates the final stage of the illness has arrived. For these patients, she added, careful hand feeding can offer a safer and more comfortable alternative to feeding tube insertion, "but it takes staff time and effort."

According to Buchman, the amount of caregiver time and effort to work with patients and try to feed them by mouth and to do it safely is "substantial." Emory University Hospital's 2006-2007 rate of feeding tube insertions for patients with advanced dementia was 24 per 100; Buchman said he did not want to comment on those figures, given that he has only been working at the hospital since July 2009.

Cindy Norris, who directs critical care at Lakewood Regional Medical Center & Heart Institute in Ft. Pierce, Florida, says the wishes of patients and their families determine whether or not someone with advanced dementia will receive a feeding tube. The hospital had one of the highest rates of feeding tube use in patients with advanced dementia, according to Teno's study, with 37.5 insertions for every 100 admissions of such patients in 2006-2007. Norris said she did not have more recent figures on hand, and she did not comment directly on the study or on Lakewood's feeding tube insertion rates.

When a patient's wishes aren't known, Norris adds, hospital personnel will speak with family members to find out. "If they prefer to have everything done to keep them alive...then we would treat them as per their wishes," Norris says. She added that nutrition is important in helping patients heal, and that blanket recommendations can't be made on whether or not a person with advanced dementia should get a feeding tube. "We look at every patient individually."

Although her study didn't investigate why hospitals opted for feeding tube insertion, Teno says it's likely that cost concerns are a factor. Most of these older patients are on Medicare and Medicaid, she explained, and the way that reimbursement works means nursing homes tend to ship them to hospitals when they get sick. Then, hospitals will try to discharge these patients back to the nursing home as quickly as possible. Inserting a feeding tube allows the hospital to discharge a patient faster, Teno adds, while for nursing homes, tube feeding is less time consuming than hand feeding.

It's questionable, Teno notes, whether hospitalizing these patients in the first place is helpful. "It can be very disruptive and very stressful to take someone who is in the throes of dementia and put them in an acute care hospital," Teno says. "I'm really concerned that the financial incentives now are aligning with hospitalizing these people rather than trying to keep them in a less restrictive environment and treat them in a nursing home."

For a person with advanced dementia, the onset of eating difficulties should be "a stop sign to say listen, we need to talk about what are the patient's wishes and values for future medical care," she adds. "Helping people make the best decision for their loved one is very important."

Teno and her team have compiled a list of hospitals and their rate of feeding tube insertion in patients with advanced dementia, which is available online here