End-of-Life Choice, Palliative Care and Counseling

When Demented Patients Receive Feeding Tubesby Sonja

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May 9, 2011
By PAULA SPAN
The New York Times

I wrote a few months back about one of the toughest decisions families face as their elders falter: whether to allow insertion of a feeding tube. Somehow, this question seems to stir up even more doubt and anxiety than other medical interventions intended to prolong or improve life. When a senior nears death and cannot speak for herself, we may find it easier to say no to cardiopulmonary resuscitation or a ventilator than to say no to nutrition.

Nourishment, after all, is the way we show love and care from the earliest moments of life. “What happens when you get sick?” said Dr. Joan Teno, a community health physician and researcher at Brown University. “Your mom feeds you.”

So for nursing home residents with advanced dementia, sons and daughters often opt to return the favor — even though the medical consensus is that it’s not a favor. Most dementia patients will eventually develop problems with eating and swallowing as the disease progresses, but feeding them through surgically implanted tubes has not been shown to improve their survival, to prevent pneumonia or heal bedsores, or to improve their quality of life. Nevertheless, about a third of nursing home residents with advanced dementia do receive feeding tubes, usually during a hospitalization.

Dr. Teno’s most recent study, published on May 3 in The Journal of the American Geriatrics Society, goes a long way toward explaining why that happens.

She and Dr. Susan Mitchell of the Hebrew Senior Life Institute for Aging Research, veteran researchers (for 10 long years) into the use of feeding tubes, led a team surveying family members, after their relatives’ deaths, on the decisions they’d made. They interviewed 486 people in five states, two with low rates of feeding tube use (Massachusetts and Minnesota) and three with high rates (Alabama, Florida and Texas).

The fact that some American hospitals inserted no feeding tubes — zero — in patients with advanced dementia over an eight-year period while others intubated one in three, findings from a previous study by these researchers, was a tip-off that something besides medical need was at work.

What emerged from families’ accounts is that the decision process about feeding tubes hardly merits the phrase “informed consent.” Of patients who received feeding tubes, 13.7 percent of family members reported that doctors had inserted the tubes without seeking permission at all. “I just walked in and it was there. Nobody talked to me,” one relative told the interviewer.

This stunned even an old hand like Dr. Teno. “My expectation was, we’ll find there weren’t good discussions,” she told me in an interview. “I wasn’t thinking we’d find there was no discussion.”

But even when medical providers raised the issue and a feeding tube was inserted, 12.6 percent of the family respondents said they had felt pressured by the physician to agree to the procedure, and more than half believed that the physician strongly had favored tube insertion. Moreover, these talks tended to be cursory: More than 40 percent of respondents said the discussion had lasted less than 15 minutes, and roughly a third said no one had mentioned the risks involved.

“We’re falling short of our ideals,” Dr. Teno lamented.

The frequent failure to outline the problems associated with feeding tubes was particularly disturbing, in her view. When demented patients are bothered by their tubes — and almost 40 percent of family members said they had observed signs of distress — they often try to pull out the tubes. “Then they’re given drugs to sedate them, or their hands are tied down,” Dr. Teno said. In this study, where patients’ average age was nearly 88, more than a quarter of those with tubes were restrained, physically or with medication. Tubes can also cause infections, nausea, vomiting and diarrhea.

Why the apparent push for feeding tubes? “My guess is, we’ve changed hospital medicine to focus on discharge,” Dr. Teno said. “How do we move someone quickly out of the system? You put the feeding tube in, you send people back to the nursing home.”

The pressure has less to do with fees, she thought — it’s not particularly expensive to put in a feeding tube, relative to other hospital procedures — than with time. Explaining to families what feeding tubes can and can’t do, answering their questions as they grapple with the decision, takes a lot of that.

(My own theory: It also requires an acknowledgment that advanced dementia is a terminal condition. Too often, doctors still don’t want to talk about death.)

In the end, about a third of these families said they thought the feeding tube did improve their loved ones’ quality of life, while only 23.4 percent said they regretted the use of the tube. Yet Dr. Teno wonders how well those numbers reflect reality.

“We mismanage this final chapter of life, and it can be traumatic for family members,” she said. (She’s also a hospice medical director.) In the aftermath, “people have to make peace with their decisions.”

But perhaps they would have reached different decisions if they’d gotten more information, and more unbiased information, before they had to make them.