Make Your Health Care Preferences Known
Every one of us has an opportunity to let others know ahead of time what our health care preferences are in case we find ourselves in a situation where we are unable to communicate them. Receiving a life-threatening diagnosis such as ALS makes this type of communication even more important. An advance directive is a legal document used to instruct others about your health care wishes. It acts as a guide for your loved ones and health care providers to make health care and treatment-related decisions on your behalf, should you become unable to convey them due to illness or incapacity.
An advance directive allows you to:
- Name one or more people as your health care agent or proxy (decision-maker.) It is the planning conversations that you have with your health care decision-maker(s) and providers that are crucial, as they help those around you to truly understand your wishes.
- Put into writing what type of care and treatments you would or would not want, depending on the situation & possible outcome.
How an advance directive is beneficial:
- It empowers you, the person with ALS. The process of completing an advance directive gives you an opportunity to think through and plan for the different aspects of your disease, to express yourself to those around you, and hopefully to provide you with peace of mind that you will be able to influence your care even in the event that you are unable to communicate it.
- It empowers your loved ones. By completing an advance directive and talking with your loved ones about your preferences, you give them the gift of knowledge. In doing so, it will minimize any possible feelings of guilt and uncertainty they might have if they ever need to speak on your behalf.
- It empowers your health care providers to move forward or stop certain treatments with confidence.
What to Consider When Completing an Advance Directive:
There are numerous treatment options to consider when completing an advance directive. The advance directive form generally lists examples of these situations in order to give you a chance to think about how you feel about each one. However, it will also be useful to consider the following specific treatments commonly associated with ALS :
- Feeding gastrostomy tube placement when nutritional needs cannot be met.
- Invasive mechanical ventilation with tracheostomy due to respiratory/breathing failure
Where to Find an Advance Directive form:
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
Who to give copies to and where to save?
Copies of your advance directive should be given to your health care agent/proxy, your doctor(s), and to your hospital in the event that you become hospitalized. It is also a good idea to inform key family members and friends about where the document is located. It is helpful to keep track of who has a copy so that you know who needs to be informed of any updates you might eventually make to it.
Can I change my mind?
You can make changes to your health care directive at any time. It is a good idea to review it from time to time to make sure it still represents your preferences. Be sure to keep your health care agent/proxy informed of your updates, and replace any old documents with the new one.
Do I need an attorney?
While an advance directive is a legal document, it does not require the assistance of an attorney to complete it. Depending on the State in which you reside, you will need only one or two witnesses, or a notary.
If you need assistance or have questions, contact your local care team.
Last updated in June 2015
