In most people’s journey with ALS, they will be confronted with the decision of using a feeding tube to help maintain proper nutrition and enhance their quality of life. As part of the ALS care planning process, people with ALS should discuss the various options with their multidisciplinary care team, weigh the pros and cons, and understand how their decision may impact their overall health.
“I understand that deciding whether to get a feeding tube or not can be a difficult decision,” Craig Kloss shared about making his own choice.
In recognition of Feeding Tube Awareness Week, we wanted to share a new resource available to help address some of the common concerns and misconceptions about them. Here are ten things to know to help you decide if a feeding tube is right for you.
- Think about it now. Allow yourself time to learn about feeding tubes, so you can make the best decision for yourself.
- Talk to your ALS team. You don’t have to wait for your care team to bring up feeding tubes. You can start the conversation any time.
- Knowledge is power. Ask your ALS clinic team and the ALS Association for trusted resources to educate yourself.
- Include your loved ones. Include your loved ones in conversations about the benefits and barriers to having a feeding tube.
- Timing matters. Weight loss and breathing ability will impact the best timing to have a feeding tube placed. Talk with your ALS team for help determining the right time.
- Minor surgery. The procedure is typically done out-patient, and anesthesia is required. A small incision is made in the abdominal wall and a flexible tube is inserted into the stomach.
- Feeding tubes are not just for nutrition. A feeding tube can make taking medications and additional fluids easier.
- You can still eat. Unless you have been advised that swallowing is unsafe, you can continue to eat foods for enjoyment and use the feeding tube to supplement your nutrition.
- You maintain control. You can make your own decisions about when to use a feeding tube, just as you would decide about when to eat and drink.
- It won’t impact your usual activities. A feeding tube should not interfere with the activities you enjoy.
The following additional resources have been developed to provide you with the knowledge you need to help make this decision with the minimum amount of stress and difficulty:
- ALS.org: Nutrition & Feeding Tubes
- ALS Association Resources Guide: Adjusting to Swallowing Changes and Nutritional Management in ALS
- Webinar: Promoting Adequate Nutrition - How a Feeding Tube Helps
- ALS Association Factsheet: FYI: Information About Feeding Tubes
- ALS.org Blog: What to Know About Feeding Tubes and Decision Making When Living with ALS
- Connecting ALS Podcast: "Feeding tubes and the Mind Body Connection"