ALS Medical Decisions |
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Though there is no cure for ALS, there are some very important medical decisions you will need to make. We recommend educating yourself, discussing options with your loved ones and ALS clinic team, and making decisions well ahead of time.
Should I take medication, or participate in a clinical trial?
There are only a few drugs that have been approved to help treat ALS. Two of them may slow the progression of the disease. At this time, there are no drugs that can stop or reverse ALS. In addition to deciding whether to take medication, you may also choose to participate in a clinical trial that tests the effects of new drugs.
Should I get a feeding tube?
If you are choking or having trouble eating, drinking, swallowing, or maintaining your weight, you may want to consider getting a feeding tube. Most ALS patients elect to get feeding tubes, which help ensure they receive proper nutrition, hydration, and medication. The surgical procedure takes 30 minutes and you can always decide later whether or not you want to use it.
Should I get a tracheotomy and go on ventilation?
If you are having difficulty breathing, you may consider getting a tracheotomy, which creates a surgical opening in your neck that connects to a ventilator. Going on 24/7 breathing support should help you live longer, but there are a number of serious considerations to weigh before taking this irreversible step. Only 10% of Americans with ALS choose this route.
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How should I decide?
These are very personal decisions—what may feel right for one person may not be right for another. We recommend the following to get started:
1. Consult with your ALS clinic team.
This is your team of medical experts. They know you and are monitoring your situation. Ask them questions. Learn about your options. Ask for their opinions and advice.
2. Discuss your medical decisions ahead of time.
Explain your thinking to your loved ones. These conversations may be difficult, and everyone may not agree. But this is better than the alternatives of trying to decide under pressure, losing the capacity to communicate, or leaving it up to your loved ones to try to decide.
3. Update your advance directives.
Make sure your loved ones and doctors know your wishes and have copies of all documents.
This is your team of medical experts. They know you and are monitoring your situation. Ask them questions. Learn about your options. Ask for their opinions and advice.
2. Discuss your medical decisions ahead of time.
Explain your thinking to your loved ones. These conversations may be difficult, and everyone may not agree. But this is better than the alternatives of trying to decide under pressure, losing the capacity to communicate, or leaving it up to your loved ones to try to decide.
3. Update your advance directives.
Make sure your loved ones and doctors know your wishes and have copies of all documents.
