How Do Feeding Tubes Work?
The prospect of getting a feeding tube fills many people with dread. It may signal the end of eating and drinking by mouth or the progression of a life-limiting disease.
For the Fowler family, a feeding tube allowed them to improve the health of their daughter Haidyn. The 8-year-old was diagnosed three years ago with mucopolysaccharidosis type III, or Sanfilippo syndrome, a rare inherited metabolic disorder that disrupts the ability to break down certain carbohydrates, leading to damage in the brain and nervous system. “We didn't think Haidyn was absorbing nutrients properly from food since she hadn't gained weight in several years,” says Carrie Fowler, of Cedartown, GA. “By age 6, she was struggling to swallow properly. And we didn't know it, but she was silently aspirating food and liquids into her lungs, which could cause pneumonia. She was also holding food and medications in her mouth instead of swallowing them.”
Last summer, Haidyn had a gastrostomy tube inserted into her stomach through her abdomen. She uses the tube to take some fluids, medications, and enough food to meet her daily nutritional needs. She still drinks fluids normally and enjoys some favorite treats like mashed potatoes, fruit snacks, and even a hot dog on the Fourth of July at the table with her parents and older sister.
Within days of using the tube, Haidyn was sleeping better at night, had put on weight, and could take medications more quickly and easily. “If a medication for pain or for pressure on her brain isn't working well enough, we can tell right away and increase the dose as needed,” says Fowler. “As a result, Haidyn is more comfortable now.”
When using the tube for a meal, Haidyn gets a plant-based pediatric formula delivered through a special syringe connected to a tube inserted into a silicone port in her abdomen. For people who need continuous feeding over several hours, a programmable pump delivers food slowly through a feeding bag attached to the tube. Before and after every use, the tube must be flushed, all supplies must be washed, and the skin around the port should be cleaned. Many different formulas are available, and some people or their caregivers create homemade versions by pureeing food in a blender, then thinning it to the right consistency with additional liquid and straining it if necessary.
People with neurologic conditions such as Sanfilippo syndrome, ALS, or stroke may receive feeding tubes when brain and nerve damage interfere with chewing and swallowing. In some cases, a neurologic disorder can sap the stamina needed to eat and drink regularly. Using a feeding tube in these situations can prevent weight loss, dehydration, and nutrition deficiency. Other advantages include improved energy levels and fewer chest infections from aspirating food into the lungs, but benefits can vary widely from person to person, says Corey R. Fehnel, MD, FAAN, assistant professor of neurology at Beth Israel Deaconess Medical Center in Boston.
“Patients feel better,” says registered dietitian nutritionist Theresa Gentile, coordinator of the home enteral nutrition program at Maimonides Medical Center in Brooklyn, NY, and national spokesperson for the Academy of Nutrition and Dietetics. “I've had clients’ children say, ‘Oh, my mother has color in her cheeks. She looks brighter and healthier now.’”
Tube feeding also can reduce anxiety and tension around mealtimes, Gentile adds. “It relieves the pressure on caregivers to ensure that their loved ones are getting enough to eat and the worry for patients about aspirating food or fluids into the lungs, which can lead to pneumonia.” Feeding tubes also may help people live longer. A study published in Nutrients in 2021 of people with ALS found that feeding tubes extended survival, and getting them implanted earlier in the course of the disease reduced complications associated with them.
On the downside, feeding tubes can clog, break, leak, come loose, or irritate the skin around the opening—and aspiration pneumonia can still occur.
For these reasons, some people are reluctant to consider a feeding tube. And according to the American Geriatrics Society, a tube is not appropriate for certain patients, such as those with advanced dementia from Alzheimer's or Parkinson's disease, because it can cause agitation, necessitate restraining the person, and create pressure ulcers.
Different tubes are used depending on the situation. Hospitalized stroke patients, who could have trouble swallowing, may use a temporary feeding tube that delivers food through the nose to the stomach. After three to four weeks, neurologists may recommend a more permanent feeding tube, such as a percutaneous endoscopic gastrostomy tube (PEG), for people who still have swallowing problems. While most stroke survivors regain swallowing abilities within four weeks, tube feeding may continue over the long term for the estimated 8 percent who still have trouble at six months, according to a UCLA study in the World Journal of Gastrointestinal Pharmacology and Therapeutics in April 2022.
A PEG is implanted by a surgeon who inserts an endoscope with a camera and light through the mouth, down the esophagus, and into the stomach to determine the correct position, then makes an incision in the abdominal wall to insert the tube. A related procedure, for radioscopically inserted percutaneous gastrostomy tubes, uses X-ray imaging to guide placement.
People who experience delayed stomach emptying due to nerve damage may receive a tube that extends through the stomach and sends food into the small intestine. This avoids reflux and stomach discomfort and can be used by people who can't take in enough formula. The procedure is often done on an outpatient basis but may require an overnight stay in the hospital.
Neurologists may recommend feeding tubes when they suspect malnutrition. Signs include unintentional loss of 5 to 10 percent of body weight, severe problems with swallowing or chewing, frequent breathing of food into the lungs, lack of appetite, and fatigue and weakness. Speech-language pathologists usually assess swallowing status by interpreting swallowing test results.
“With severe swallowing trouble, getting sufficient calories can be a challenge,” Dr. Fehnel says. “This is the best alternative we have medically, even though it's not like tasting and enjoying food and having the social benefits of eating with others.”
How to Live Well with a Feeding Tube
Incorporating a feeding tube into your life can seem daunting, especially in the beginning, says registered dietitian nutritionist Theresa Gentile, coordinator of the home enteral nutrition program at Maimonides Medical Center in Brooklyn, NY, and national spokesperson for the Academy of Nutrition and Dietetics.
For people considering feeding tubes and their caregivers, Gentile offers this advice.
Check your swallowing status. Work with a speech-language pathologist to determine whether your ability to swallow will allow you to eat some types and textures of foods and beverages by mouth. “Many of my clients can still enjoy different liquids and foods,” Gentile says. “They can sit at the family table and be part of the food and the fun for daily meals, special occasions, and holidays.”
Meet with a registered dietitian. An RD with training or experience in tube feeding can teach you or your caregiver how to use the equipment properly, schedule feedings into a busy day, and figure out the right dose of formula, what to do if you're ill, and more, says Gentile. If visits aren't covered by your insurance, seeing an RD once and paying out of pocket can be worthwhile. Your neurologist's office and the durable medical equipment company that provides your formula may also have an RD on staff who can answer questions, she adds.