The association recalled a previous interview with two feeding tube experts at the ALS Center of Excellence at Hennepin Healthcare, in Minneapolis, Minnesota, and shared it on its weekly podcast, Connecting ALS.
Most ALS patients develop swallowing problems, which can lead to coughing and choking, malnutrition, dehydration, and weight loss, while increasing the risk of serious lung infections due to food or liquid aspiration into the windpipe.
Swallowing difficulties typically have an early onset in patients with bulbar onset disease — which first affects muscles involved in speaking, swallowing, and breathing — than in those with spinal onset that first targets the limbs.
One way of managing these swallowing difficulties is to have a feeding tube fitted into the stomach through an opening made in the abdomen — a surgical procedure known as a gastrostomy. Food, drink, and certain oral medications can be delivered directly through the tube, and patients can still choose to eat normally.
In the interview, the experts noted that it is easier to have an open and informative conversation about feeding tubes before swallowing problems arise, so that patients can start thinking about it without feeling the pressure of having to make a decision.
The physician should have a discussion with the patient about whether to place a feeding tube, such as when they are taking more than a half-hour to eat a meal or when it seems they are not able to eat and drink safely without choking.
In addition, patients may not realize they are “slowly not eating as much as they should be eating” and not getting the nutrition they need, the experts said.
Besides commercial formulas, which now include whole-food options, virtually every food can be consumed through a feeding tube, they noted, explaining that it just has to be delivered in a certain consistency in order to fit through the tube.
“A lot of people use it for … things like coffee in the morning, or kind of their favorite things that they would have normally taken by mouth that they still want to consume,” the experts said.
Notably, when patients get a feeding tube, they typically are still able to consume different types of food and liquid, so “getting a feeding tube isn’t an all or nothing, all of a sudden you don’t get to have the pleasure of eating anymore,” the experts said.
Eating foods patients enjoy may require only small adaptations to make it safer, like cutting the food into small pieces, grinding it, or blending it. And, when patients get tired of eating, the rest of their nutrition can be delivered through the feeding tube.
Patients will be able “to be more of the person they want to be and have more personality with their family just by getting that nutrition and not having to spend so much time focusing on receiving it,” the experts said.
They also noted that for many patients, getting a feeding tube is less about the feeding tube itself, and more about admitting that their disease “has progressed more than they ever thought they wanted it to,” which is hard to overcome.
“I think it’s important to show that the tube would give them more control, even though it is going the next step,” the experts added, noting that not placing a feeding tube limits patients’ options even further when experiencing worsening of swallowing difficulties.
On its website, the ALS Association also provides more information about feeding tubes and a guide for how to maintain good nutrition with ALS.
Of note, a team of researchers in the U.K. is currently working on the development of a web-based tool to help patients decide if they want a feeding tube.
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