This week is Feeding Tube Awareness Week, and in light of the fact that many people with ALS will have to face the decision of if or when to have a feeding tube placed, we asked Care Service Coordinator Mary Love, who is a registered dietician, some questions about the ins and outs of feeding tubes:
What is a feeding tube and are there different kinds?
A feeding tube is an alternative way to get nutrients and fluid when doing so by mouth becomes too difficult and/or unsafe. It is a small device that’s inserted into the stomach through the abdomen. There are a few different kinds, with the most common being a g-tube, which is inserted into the stomach and held in place by an internal balloon and an external bumper. The tube itself rests on the abdomen and can be manipulated to be as non-intrusive as possible. In some cases, a person may have a low profile tube, referred to as a button. This is held in place the same way, but sits flush with the skin and requires extension sets rather than having the tube attached at all times. Most providers will place a regular g-tube prior to a low-profile option but it is something that can be discussed once a decision has been made.
Once a feeding tube is placed, there are three methods by which nutrition can be delivered: bolus, gravity and an enteral pump. Bolus feeding is the most common, and barring any digestive issues, is likely what a person with ALS would use. This method uses syringes, placed into the feeding tube and delivered over a few minutes. This is done a few times each day, and can be done anywhere a person is comfortable. If a person shows intolerance to bolus feedings, gravity may be recommended. A gravity bag slows the formula down as it travels into the tube, delivering nutrition over a period of about 20-30 minutes. This is typically done a few times a day, and does require an IV pole, but no other equipment. The rate at which formula is delivered is manually controlled by the user. Finally, the most invasive method is an enteral pump. A pump delivers nutrition at a specified rate over a period of time. A pump is unlikely unless there is a history of bowel issues in addition to ALS, or complications arise with other delivery methods such as excessive vomiting or diarrhea. Ultimately, your feeding method and schedule should be individualized to your comfort.
When should a person with ALS consider getting a feeding tube?
There are a few different markers for when to consider a feeding tube. The current recommendation is for a tube to be placed when someone has lost 10 percent or more of their body weight unintentionally. In addition to this, signs indicating a feeding tube include: not consuming enough food by mouth, choking or aspirating while swallowing, continued unintentional weight loss, poor fluid intake and dehydration and finally decreased respiratory function. If any of these occur, it is likely for the care team to recommend feeding tube consideration.
What is the process of getting a feeding tube like?
Feeding tube placement is a surgical procedure typically done under mild sedation. 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. Placement is a quick procedure and typically requires an overnight stay in the hospital, with use of the tube 1-2 days post placement. Once placed, a person using a feeding tube can being using it as the primary source for nutrition, fluid and most medications. Formula and necessary supplies will be ordered by the physician and dietitian at the facility the tube is placed and delivered by a durable medical equipment provider, typically on a monthly basis.
What are the advantages of having a feeding tube for a person with ALS?
A feeding tube decreases the risk of choking and/or aspirating while eating. It allows for adequate fluid intake, safety in administering medications, maintaining weight, decreasing fatigue and provides an overall quality of life improvement for a person with ALS because they have the safety net that is an adequate and stable diet.
Are there reasons a person with ALS might choose not to get a feeding tube?
A person with ALS may choose not to have one placed because it is a surgical procedure; there is an inherent risk of infection or complications, especially if a person is further advanced in the disease. This is what makes the timing of placement so important. A person may also decline a feeding tube because it does not prevent the progression of the disease. Although it can improve your quality of life, many see it as a life-extending option, comparable to invasive ventilation.
What are some of the misconceptions about feeding tubes for people with ALS?
“If I have a feeding tube, I cannot eat by mouth” — This is a very common misconception; a feeding tube allows for a person with ALS to meet fluid and nutrition goals without the difficulty and exhaustion of the eating process. The main source of nutrition does become the tube, however eating and drinking for pleasure (so long as it is safe to do so) is encouraged.
“I can’t go out of the house without being hooked up to something” — 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.
It’s commonly thought that a person doesn’t need a feeding tube until they reach a certain point in the disease progression, closer to more a more advanced stage. That is true to an extent, however studies show that early placement in individuals with ALS increases survival an average of four months. With this in mind, many clinics recommend placement prior to severe weight loss or difficulty swallowing to prevent further loss and decrease risk of complications from placement.
When considering getting a feeding tube, what are some of the conversations a person with ALS should have and with who should they have those conversations?
Discussing a feeding tube with the clinic team or primary physician can help a person with ALS understand the benefits of living with a feeding tube and how it will impact their everyday life. Ultimately, the decision to have a feeding tube placed is up to the person with ALS and their caregiver or caregivers. These are the most important conversation to have. Weighing the benefits and the progression of the disease is essential; the earlier a tube is placed the better the body will be able to recover.
Thank you Mary for sharing your insights. As always, contact your Care Service Coordinator with any questions you might have about feeding tubes.