When living with ALS, there may come a time when you’re no longer able to clearly communicate your wishes and decisions will need to be made about your medical care and end-of-life plans.

To keep control over these choices and relieve your family members from having to guess what you’d want, you can make decisions ahead of time using advance directives.

An advance directive is simply a document that spells out what you want when it comes to medical treatments or end-of-life decisions. It’s written ahead of time, in advance, and tells family members and doctors what your choices would be. 

How Advance Directives Work 

An advance directive allows you to do a couple of things:

• It lets you name one or more people to serve as your health care agent or proxy, giving them the power to make medical decisions for you if you’re not able to do so yourself.
• It also lets you specify what type of care or treatments you wish to receive and list the circumstances in which you’d like them to be used.

An advance directive can cover as many different scenarios and treatment options as you want. With ALS, there are a few specific treatment options that should probably be addressed in an advance directive.

One is the use of a feeding tube, which might be needed to provide nutrition when chewing and swallowing become difficult. Another common ALS treatment is the use of tracheostomy ventilation to provide air to the lungs in the later stages of the disease.

Creating Advance Directives 

There are pre-existing advance directive forms that you can fill out with your information and your preferences. You can obtain a copy of an advance directive form any of the following ways:

• Contact your ALS physician or clinic
• Contact your State Area Agency on Aging
• Download from the Caring Connections Website

You don’t need the help of an attorney to create an advance directive, however you do need either one notary public or two witnesses to sign the form. At least one of the two witnesses has to be someone who isn’t related to you, one of your heirs, your doctor or an employee of a health care facility where you receive treatment or the person you name as your agent or proxy.

Once the advance directive form is filled out and signed, copies should be given to your health care agent, your doctor and your hospital. Tell key family members or friends where a copy of the advance directive can be found, in case they ever need to locate it.

If you ever change your mind about any of the decisions listed on your advance directive, you can update it or replace it with a new document at any time. It’s helpful to keep track of everyone who has a copy of the document, so that you can update them when there are changes.