We understand that every individual is unique, and no two people approach decision-making the same. This is especially true when approaching decisions that have the potential to directly affect your future.
Regardless of your perspective, the need to plan is something we all have to think about and discuss with those who will also be impacted by these decisions.
The information below can help you as you engage in this decision-making and planning. As always, your Care Coordinators and clinic team are available to help talk through all these questions.
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. It is imperative that these wishes 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.