Advance Directives

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Advance directives are written documents that you can complete to let everyone know what type of medical treatment you would—or wouldn’t—want in the event of a medical emergency. If you become unable to make decisions, advance directives will make your wishes clear to your loved ones and to the medical professionals caring for you.

Why should I do this?

If you do not create advance directives ahead of time, your loved ones may find themselves in the challenging position of trying to make a decision for you. This can lead to confusion, guilt, and animosity. Advance directives can provide peace of mind for you and clarity for your loved ones.

It is very important to have a discussion with your loved ones and decide in advance whether or not you would want to have a tracheostomy procedure and be placed on invasive mechanical ventilation. If you do not discuss or write down your decision, the decision could be made for you in an emergency situation—and it may not be what you want.

Unwanted tracheostomies can and do happen. Medical professionals are obligated to do everything in their power to keep you alive—unless they have instructions from you stating otherwise.

Advance directives are simple forms. You do not need a lawyer to fill them out, though you can always seek legal advice if you’d like. You can change your advance directives whenever you’d like. The most important thing is to put your current decisions in writing so there is never any doubt about what you want.

Which forms should I fill out?

The three main types of advance directives for people living with ALS are a living will, a medical power of attorney, and a do not resuscitate (DNR) order. The official names of these documents can vary between states.

A living will is the core document that describes the type of life-prolonging support you would or wouldn’t want to receive, such as CPR, ventilation, a feeding tube, and pain management. A living will is different from the type of will that assigns property and money to loved ones upon death.

A medical power of attorney (POA), also called a health care proxy or durable power of attorney for health care, is a legal document that designates the person or persons you would like to make medical decisions on your behalf should you become unconscious or unable to make decisions. This person may be called a proxy, agent, surrogate, or representative.

Designating a medical power of attorney in addition to filling out a living will allows your proxy to communicate with medical professionals and make decisions in situations that may not be spelled out directly in your living will. If you have clearly communicated with your proxy, he or she should have a good idea of what you would or wouldn’t want.

It is important to choose a proxy you trust and who will follow your wishes, even if your loved ones strongly disagree. Ideally, this person can remain emotionally calm and stable in the event of an emergency. You do not have to choose a family member, and you may not designate a person who is on your medical team. You can choose more than one person, but if you do, you will need to designate which person will be in charge if both are present at the same time.

If you do not want first responders or medical professionals to attempt life-saving measures should you stop breathing or your heart stop beating, your doctor will need to sign a do not resuscitate (DNR) order for you. Your DNR will not be valid unless your doctor completes it and signs it.

Even if you already stated in your living will that you don’t want CPR or other life-saving measures, you should still fill out a DNR. In the event of an emergency, first responders and hospital staff will be obligated to try to save your life—unless they immediately see your DNR. They will not have time to look for and read your living will. Your DNR form should be posted in a visible place at home and ideally filed in your medical records.

Note: You may want to ask if you need a do not intubate (DNI) order in your state as well. Intubation is when a medical team puts a tube through your nose or throat if you are unable to breathe on your own. Intubation can lead to a tracheostomy, in which case you may wake up trached and vented, whether you wanted it or not. Clearly stating in your DNI or elsewhere that you don’t want intubation or mechanical ventilation will help avoid this scenario.

Where can I find these forms?

The social worker at your ALS clinic, your local ALS Network care manager, or local hospice should be able to give you the forms, help you fill them out, and answer your questions. Your hospital should have forms available, too.

You can also search online for advance directives in your state. The National Hospice and Palliative Care Organization makes it easy to find and download your state’s advance directive forms. They also provide state-specific information and step-by-step instructions that walk you through the process. The website eforms has downloadable DNRs and downloadable living wills for each state.

Another option is called Five Wishes, which is a simple living will that gives you the freedom to express your most important wishes in a variety of areas, from medical and legal to personal and spiritual. It is a legal document that is accepted in most states. You can ask your local ALS Network care manager or ALS clinic for a copy, or you can buy a copy from their website or complete it online.

If you spend a significant amount of time in another state, you may want to find out if each state honors the other’s forms. If not, you may want to fill out advanced directives for both states.

You can also create your own advance directives form, but you will need to make sure you comply with your state’s requirements in order for it to be considered a legal document.

Every state has its own forms and laws about advance directives.

What else do I need to do?

We recommend starting with the social worker at your ALS clinic, your local ALS Network care manager, or local hospice. Review the forms together, ask questions, and discuss your options. You may also want to meet with your neurologist and ask what could happen in various medical scenarios.

Though this can be a difficult topic to discuss with your loved ones, it is important to explain your decisions and make sure that everyone understands your wishes, even if not everyone agrees. If you are worried about initiating this conversation, ask your social worker to facilitate, answer questions, and educate everyone.

Once you have made your decisions, you will need to fill out the forms and sign them with a witness present, and possibly a notary, depending on your state’s laws. If you comply with your state’s requirements, your forms will become legal documents when you sign them.

Give copies to your proxy, loved ones, medical teams, and the hospital where you would go in the case of an emergency. Keep your original in a safe place that others know about and can access in the case of an emergency. Other options for making sure your wishes are shared include emailing copies, storing them on the cloud, keeping a card in your wallet, traveling with your documents, and having a flashdrive with you.

Also be sure to tell your loved ones who you have designated as your proxy. Explain that this person’s role is to carry out your wishes.