Feeding Tubes for People Living With ALS: Clearing up Some Misconceptions

For many people living with ALS, the decision to have a feeding tube placed, if or when it’s needed, is an important one, and as with many decisions that must be made during an ALS journey, it’s not of the one-size-fits-all variety. In recognition of Feeding Tube Awareness Week, we wanted to share some common concerns and misconceptions about them as well as some resources to help.

You shouldn’t have a feeding tube placed until you really need one.

While the right time to consider a feeding tube will vary depending on your individual circumstances, for a person with ALS, an unintended loss of 10 percent of body weight is usually a good indicator that a feeding tube may be beneficial. Other signs to be aware of are when eating leads to fatigue, when one has difficulty eating enough to sufficiently nourish themselves or when one has difficulties with chewing, gagging, or swallowing. Recognizing these challenges will allow you and your care team to be proactive in the decision-making process.

Getting a feeding tube is a painful process.

While it is true having a feeding tube placed is a surgical procedure, it is generally a safe, simple procedure that can take as little as 30 minutes. There are two ways to place the tube, either using an endoscope through the mouth to the stomach wall or under guidance of an x-ray machine. If there are no complications, the person often can go home the same day or at most after an overnight stay in the hospital. In most cases the procedure causes no more than mild pain and discomfort for a short period of time.

“After listening to the specialists, watching the online videos, and talking it over with my wife, I decided very quickly that the benefits far outweighed any misgivings I had.”

Craig Kloss

If I have a feeding tube, I cannot eat by mouth.

A feeding tube allows a person with ALS to meet fluid and nutrition needs without the difficulty and exhaustion of the eating process, but that does not mean you cannot eat by month if and when you want to. With the feeding tube providing the main source of getting the needed calories, eating and drinking by mouth can be saved for pleasure and enjoyment.

Feeding tubes are only for food.

While it is called a “feeding” tube, the name is a bit of a misnomer. In many cases, it can also be used to deliver medications as well. Some pills can be ground up and liquids can be delivered this way if swallowing becomes a problem, ensuring a person with ALS is getting enough hydration when drinking by mouth is a challenge. Consult with your care team to determine the safest options for you.

Once I have a feeding tube, I won’t be able to go out of the house without being hooked up to something.

Once placed, the equipment needed to use the feeding tube is minimal and does not require much space to transport. With bolus feeding, all that’s needed is a syringe and formula. In cases where there are severe digestive issues, a pump may be necessary, but in all likelihood a person with ALS who chooses to have a feeding tube placed will see minimal impact on their ability to leave the house, socialize, and do other things they enjoy.

Ultimately, the decision to have a feeding tube placed is a personal choice for a person with ALS and their caregivers. It is important to plan ahead and discuss the different options with your care team to help weigh the pros and cons and understand how the decision will affect your overall quality of life.