Despite evidence family members feel feeding tube improves quality of life for elderly dementia patients

Talks with doctors sometimes fall short of informed consent

Despite evidence that feeding tubes do not improve survival rates or quality of life for elderly patients with advanced dementia, their frequency of use varies widely across the states. A new survey of family members finds that discussions surrounding the decision to place feeding tubes surgically are often inadequate.

Advanced dementia is a terminal illness that often affects a patient's ability to eat. In prior research, Joan Teno, professor of community health at Brown University, has documented a striking variation in feeding tube insertion rates.

To gain insight into the decision process and how it is informed by doctors, Teno and colleagues led a five-state survey regarding feeding tube insertion with family members of elderly patients who had advanced dementia. The results, published online in advance by the Journal of the American Geriatrics Society, will appear in the May 13 print issue.

"Our results suggest that in these states with a high rate of feeding tube insertion we need to improve decision making so that the decision to insert a feeding tube is based on a process that elicits and respects patient's wishes," said Teno, the paper's lead author.

Among the study's key findings:

• 13.7 percent of family members who said their family member received a feeding tube stated that medical providers inserted the tube without discussing it first;
• 11.2 percent said they felt pressured by the physician to put in a feeding tube;
• 38.2 percent believed that that physician was strongly in favor of feeding tube insertion;
• 41.6 percent of the time the discussion regarding feeding tube insertion lasted less than 15 minutes;
• 39.3 percent did not discuss the risks of feeding tubes.

The study sample size was 486 people in five states, mostly sons and daughters who were either the persons named in an advance directive or were the person identified as the surrogate decision maker for a patient with advanced dementia. Teno led a group of researchers from Brown, the Hebrew Senior Life Institute for Aging Research in Massachusetts, and the University of Texas Southwestern Medical Center in asking people to describe the communication they had with physicians surrounding whether to insert a feeding tube for their loved ones.

The five states were selected because they had especially high (Texas, Alabama, and Florida) or very low (Massachusetts and Minnesota) rates of intubation. Extrapolating the survey group to the entire population of the five states, much like public opinion polls do, the figures would represent 9,652 cases of elderly patients with eating problems while dying from advanced dementia.

Despite research studies that question the value of feeding tubes, 32.9 percent of people in the survey said the feeding tube did improve quality of life for their loved ones. That was more than the 23.4 percent who said they regretted using a tube.

Teno cautioned against becoming complacent about the level of satisfaction family members recall, especially after dialogues that sometimes lack all elements necessary for fully informed consent.

"I watch people who make decisions that are really difficult," she said. "To continue on they have to make peace with their decisions."