Planning ahead and communicating your wishes 

It’s never too early to start thinking about whether you want to use a trach and IMV, even if you’re not having trouble breathing or swallowing right now. Why? ALS can progress (get worse) quickly, and you may lose your ability to speak out loud.

Some people living with ALS communicate in other ways, like writing on a notepad or using communication apps or devices. This is called augmentative and alternative communication (AAC). But there are some situations where you could lose the ability to communicate at all. If you aren’t able to tell doctors what you want, they may ask your loved ones — or make decisions for you based on their medical expertise.

That’s why it’s important to think about whether you want to use a trach and IMV ahead of time. This tool can help you make the decision that’s right for you.

Beyond the decision of whether to use a trach and IMV, it’s important to think about what you want when it comes to end-of-life care. Talk to your loved ones and your ALS care team — and put your choices in writing. Creating a legal document called an advance directive is the best way to document your wishes for end-of-life care. A Physician/Practitioner Order for Life-sustaining Treatment (POLST), also called a Medical Order for Life-Sustaining Treatment (MOLST) in some states, is a specific type of advance directive that’s especially important for people living with ALS. It’s a legal document that tells doctors whether you want to receive life-sustaining treatment, or life support.

To learn more about advance directives and create your own, explore resources from Five Wishes. You can also learn more about POLST from the National POLST Collaborative.