ALS Medical Decisions

Some people who are newly diagnosed with ALS prefer to live day by day and not think about what the future will bring. Others want to learn everything ahead of time and begin planning for future scenarios. Whatever your approach, there are two very important medical decisions that are best made well in advance.
Deciding now whether you’ll get a feeding tube or tracheotomy may feel strange, but discussing these topics ahead of time with your ALS clinic team and loved ones is better than having to make a quick decision in an emergency situation. Putting your decisions in writing with advance directives can provide peace of mind for you and clarify for your loved ones. You can always go back and change your decisions at any time.

Feeding Tube

A feeding tube is a small, flexible tube inserted into your stomach that helps you receive hydration, nutrition, and medication. A feeding tube is helpful if you are choking frequently (especially at meal times) or having difficulty chewing, swallowing, maintaining your weight, or staying hydrated.
At some point, most people living with ALS elect to get a feeding tube, which involves a short surgical procedure followed by training from your dietitian. You can always get a feeding tube and then either not use it or have it removed.

You can still enjoy tasting food by mouth whenever you like, but your main source of nutrition will come from your feeding tube. Using a feeding tube can also reduce your risk of choking, or of having food and water go down the wrong pipe (into your lungs instead of your stomach), which can lead to life-threatening pneumonia.
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Your neurologist and dietitian can discuss the pros and cons of feeding tubes with you, and when you should consider getting one. Learn more on our feeding tubes page.

Tracheotomy and Ventilation

Deciding whether to get trached and vented is perhaps the most consequential medical decision you will make. This procedure will likely prolong your life, but it can come at a great expense to you and your family. It does not slow down or reverse ALS.

A tracheotomy is a surgical opening in your neck through which a breathing tube is inserted directly into your windpipe. A ventilator, or breathing machine, is then attached to help you breathe. Once you are “trached and vented,” the ventilator will breathe for you when your respiratory muscles are no longer strong enough to breathe on their own.
It is best to make this decision well ahead of time—when you can still fully express yourself, ask questions, discuss, and explain your decision. Once you decide, be sure to update your advance directives so that your wishes are crystal clear to loved ones and medical professionals.

​This is a very personal decision. Only you and your family will know what is best. Unlike a feeding tube, getting a tracheotomy is a decision that cannot be reversed. In the United States, fewer than 10% of ALS patients get trached and vented.

​If you are considering getting a tracheotomy, discuss the pros and cons with your neurologist, ALS clinic team, and local ALS organization. It is important to talk with your loved ones, because once you are trached and vented, you will need 24/7 assistance. Most families cannot afford full-time professional care, which means that family members become full-time caregivers.

Some people choose to extend their lives for reasons like spending more time with loved ones or fulfilling a greater purpose, despite the limitations that come with 24/7 ventilation.

Learn more on our tracheotomy and ventilation page.