The evidence that feeding tubes should be avoided in patients with advanced dementia has accumulated for years now, but the practice persists.
Physicians can face numerous challenges to handling this issue well, according to those who have studied it. It requires a complex, potentially lengthy discussion with the patient's family, who may be emotional and not yet understand that advanced dementia is a terminal disease.
Since these discussions often occur after the patient has been hospitalized, the doctor involved may have just met the patient and his or her loved ones, said Colleen Christmas, MD, FACP, a geriatrician and associate professor of medicine at Johns Hopkins School of Medicine in Baltimore.
“There is a lot that goes into this decision that has nothing to do with science,” she said, noting that patients' eating difficulties are likely not new, as that's one of the signs of advancing dementia. “It's very distressing for loved ones to watch someone get thinner and thinner and thinner and then die.”
The result has been a disconnect between belief and practice, as a recent study showed. Just 4% of 168 internal medicine physicians and residents said that they would want a percutaneous endoscopic gastrostomy (PEG) tube if they themselves developed advanced dementia, according to the survey findings, published in January 2018 in the Journal of the American Geriatrics Society (JAGS).
But only 52% of the physicians reported feeling in control of the decision to place a PEG tube in such situations, citing other influences, including family member requests contrary to physician recommendations. Other influential, although less common, factors included concerns about potential litigation or requirements by skilled nursing facilities that a tube be placed prior to admission.
Overcoming these challenges and improving the use of feeding tubes is difficult, but possible, and hospitalists can play a key role, according to experts.
The facts on feeding tubes
Physicians' wishes for their own care are supported by mounting evidence and guidelines against feeding tube placement in advanced dementia.
Careful hand feeding remains the preferred option, as it avoids tube-related complications and the potential need for restraints in individuals with advanced dementia, according to the current position statement of the American Geriatrics Society, which has been updated several times, most recently in 2014. (That stance also is highlighted in the society's “Choosing Wisely” list of treatment measures that doctors and patients should question.)
The statement also notes that there's no evidence that tube feeding extends survival or prevents aspiration pneumonia.
As a geriatrics fellow, Dr. Christmas decided to research the clinical rationale for feeding tubes after she was involved with the care of a woman in her nineties who had been hospitalized after a single bout of aspiration pneumonia. Dr. Christmas was taken aback by how quickly a feeding tube was placed and how the woman was sent home no longer able to eat, “which is a really important quality-of-life issue,” she said.
A colleague suggested that they delve into the research. “The more we looked, the less we found that there was evidence in support of the practice,” she said. “The evidence base is pretty thin generally across the board. But where there is evidence, it actually is largely going against the practice of using feeding tubes.”
The resulting review article, which Dr. Christmas co-authored, was published in JAMA in 1999 and is still frequently cited. It found no studies suggesting that tube feeding prolongs survival in patients with dementia. Meanwhile, there are mortality risks around the procedure itself, the review found.
Another more recent analysis, looking at survival among 36,492 nursing home patients with advanced dementia from 1999 to 2007, found that 5.4% got a tube within a year after experiencing eating problems. Those patients' median survival of 177 days wasn't any different from that of those who didn't get a tube, according to the findings, published in JAGS in 2012.
Moreover, a feeding tube can be uncomfortable and confusing for patients with dementia, who don't understand why they're attached to something, said Marzena Gieniusz, MD, lead author on the 2018 JAGS study and a geriatrician who practices in the division of geriatrics and palliative medicine at Northwell Health in New Hyde Park, N.Y.
“They just want to get rid of it, because it's not part of their body,” she said. “They try to pull it out. The tube also can get clogged or obstructed,” she said, resulting in ED visits or hospitalizations for tube-related complications or infections.
Nor does the tube's placement decrease the likelihood of the patient developing aspiration pneumonia, according to the 1999 JAMA review article. The PEG tube doesn't prevent bacteria in a patient's saliva from migrating into the lungs, Dr. Christmas said. In fact, everyone aspirates small amounts, such as when they are sleeping, she said.
Acting on the evidence
One way hospitalists can help bring this evidence into practice is by not ordering unnecessary swallowing studies. Swallowing tests have “very, very, very little relationship with clinical outcomes,” Dr. Christmas said. “They're not good tests. They don't sufficiently predict which patients are going to develop aspiration and which ones are not.”
Hospital physicians should think twice about ordering a swallowing study, agreed Victoria Braund, MD, FACP, a geriatrician who directs the division of geriatrics at NorthShore University HealthSystem, headquartered in Evanston, Ill.
“It's going to put you on a bus to somewhere you don't want to be,” she said. Dr. Braund noted that she was offering her expertise from a unit that cares for end-stage Alzheimer's patients. “All of them would flunk a video swallow study,” she said. “But they are still eating, just soft and pureed food. We supervise them. We spoon feed them.”
Patients with dementia find it particularly challenging to eat in the hospital given that it's an unfamiliar environment, they're likely not sleeping well, and they're being asked to eat in bed rather than in a chair, Dr. Braund said. But once clinicians see aspiration on a swallowing study, there's a cascade of events that can occur, as she recounted.
“They're going to say, ‘Oh, speech therapy says they aren't safe to swallow. We don't want to feed them. We don't want to make them aspirate. And now we have to put in a feeding tube.’”
As the days when outpatient physicians rounded in the hospital have receded, hospitalists have increasingly served as the point guard in coordinating care for these patients, said Arun Swaminath, MD, a gastroenterologist and associate professor of medicine at the Donald and Barbara Zucker School of Medicine at Hofstra/Northwell in Hempstead, New York.
Frequently, much of the decision-making conversation about feeding tubes has already occurred before a gastroenterologist is called in to perform the procedure, he said. “By the time you are consulted, the family expects a feeding tube to be placed,” Dr. Swaminath said. “How do we change the velocity of that process, and make sure that the ‘right’ things are happening?” he said. “When I say ‘right,’ I put it in quotes, because maybe the right thing is for the patient to have a feeding tube.”
While in training at University of California, San Diego, Dr. Swaminath was involved with research that looked at whether the rate of feeding tube placements changed after a geriatrician got involved.
Along with educating the physicians about the pros and cons of long-term tube feeding, the geriatrician was also available to sit down with patients and their families when the procedure was being considered.
In the year prior to the geriatrician's involvement, 115 patients got a feeding tube. The following year, 60 patients did, according to the findings, published in 2010 in the Southern Medical Journal. In the cases where the geriatrician was consulted, patients and their families were three times as likely to decide against the tube—31 declined the procedure while nine got a feeding tube.
Dr. Swaminath, who was later involved in some of those tube placements, said there was a notable difference in the level of family knowledge and understanding around their decision. “They feel that they know what they're doing as opposed to that they are terrified and have to do something.”
Family members can be educated that forgoing tube feeding doesn't necessarily mean the patient won't eat, Dr. Braund said. Patients should be offered soft and pureed foods, be placed upright in a chair, and advised to take small bites, she said. If the patient is in the hospital or a nursing facility, family members can be encouraged to visit during meal times, and they can help out, connecting with their loved ones and relieving some of the staff time, she said.
A lot of the decision-making angst around feeding tubes can be averted if the patient's doctor discusses the future possibility of a feeding tube shortly after the dementia diagnosis and documents preferences, Dr. Braund said.
If that hasn't happened, there's likely to be emotional strain on the patient's decision maker, particularly if other family members are weighing in, she said. These decision-making conversations are complicated by the fact that they are often quite abbreviated. Nearly half of family members, 41.6%, reported that the discussions they had with clinicians lasted fewer than 15 minutes, according to a study published in JAGS in 2011.
There also are some practical implications of these decisions, Dr. Braund pointed out. It takes more staff time to carefully hand feed patients, whether in a nursing facility or the hospital, she said.
One analysis, published in 2004, found that nursing homes can have a potential financial incentive to rely on tube feeding. While Medicaid reimbursement is higher for tube-fed patients, the daily cost of their care is much less—$2,379 versus $4,219 for those individuals who are fed by hand.
This factor can affect transfers to a skilled nursing facility when patients are ready for discharge, according to Dr. Swaminath. “Often times, those transfers are delayed or not accepted if the patient doesn't have a feeding tube in place,” he said.
The good news is that, despite these challenges, practice appears to be moving closer toward the evidence and recommendations.
Fewer tubes are being placed, according to a JAMA study looking at nursing home patients with advanced dementia. By 2014, just 5.7% of those patients got a tube within a year after developing eating difficulties compared with 11.7% in 2000, according to the findings, published Aug. 16, 2016. Still, there remained a split along racial lines, with 17.5% of black nursing home patients getting a tube in 2014 versus just 3.1% of white patients.
But both those figures should be closer to 0%, said Dr. Braund. To get to that goal, it might help to remember to frame these discussions in personal terms, she suggested.
“Families get all tangled up with their own emotions,” Dr. Braund said. “So I put it back to, ‘We're talking about Mom. What would Mom want?’” Hospital physicians also can check if the patient's primary care doctor is able to join in these conversations, helping to guide the family, Dr. Christmas said. At their heart, these feeding tube discussions require everyone involved to grapple with goals at the end of life, she said.
“Really what they [family members] want to know is you're not abandoning the patient, the person that they love,” Dr. Christmas said. “I think the most important thing is to say, ‘I'm going to continue to offer great care to this person. And I'm going to continue to offer food if they want it.’”