End-of-Life Planning

Advance directives are documents wherein you can express, in written form, your medical wishes related to treatments, late-stage disease options, and end-of-life care. These wishes must be documented in this way because by law, medical providers, including EMTs, are mandated to make all efforts to resuscitate and sustain life in all situations unless explicitly indicated otherwise by the patient.

The right of a competent individual to accept or withdraw medical treatment is protected by law. But while ALS does not typically affect a person’s decision-making capacity, it CAN affect a person’s ability to communicate. By completing an Advance Directive, you are sharing your medical wishes and priorities with your loved ones including, if desired, with a designated proxy who can speak for you if you are unable to. By designating a proxy, you are also ensuring that there is a trusted person who can be your voice in cases where you may not be able to communicate your own wishes and that this person has been authorized by you.

This can be a great gift to loved ones if there are any disagreements among them about decisions. Your expressed wishes communicated clearly, will always supersede anything that is written should you change your mind. Indeed, it should be reviewed periodically to ensure that it remains an accurate reflection of your wishes, but by completing an Advance Directive, you have the security of knowing that your wishes will be respected.

A complete Advance Directive includes both a Proxy Directive and an Instruction Directive so you can both identify a trusted individual to speak for you as well as provide instructions for your care that align with your hopes, dreams, and values.

One way to have a say in your future medical care is to designate a person (a proxy) you trust and give that person the legal authority to decide for you if you are unable to make decisions for yourself. Your chosen proxy (known as a health care representative) serves as your substitute, "standing in" for you in discussions with your physician and others responsible for your care. So, by a proxy directive we mean written directions that name a "proxy" to act for you. Another term some people use for a proxy directive is a "durable power of attorney for health care".

Another way to have a say in your future medical care is to provide those responsible for your care with a statement of your medical treatment preferences. By "instruction directive" we mean written directions that spell out in advance what medical treatments you wish to accept or refuse and the circumstances in which you want your wishes implemented. These instructions then serve as a guide to those responsible for your care. Another term some people use for an instruction directive is a "living will".

Combined directives -- A third way combines features of both the proxy and the instruction directive. You may prefer to give both written instructions and to designate a health care representative or proxy to see that your instructions are carried out. So, by a "combined directive," we mean a single document in which you select a healthcare representative and provide him or her with a statement of your medical treatment preferences.