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National Healthcare Decisions Day is April 16th

April 16th is National Healthcare Decisions Day, which is a nationwide initiative to encourage everyone to plan ahead for a healthcare crisis.  “Advance Care Planning (ACP) is thinking and talking about future healthcare decisions.” Advance Care Planning is an uncomfortable discussion that many avoid having, but putting off such an important conversation can mean having it too late.

ACP is a gift a patient can give to their loved ones that helps them know how to support the patient’s wishes when healthcare needs change. Documenting wishes for important medical decisions that may affect quality of life is also a way people living with ALS can have a sense of control over an uncertain healthcare continuum.

Whether you’re a patient or caregiver, having conversations about future medical care decisions should be an essential part of a healthcare journey starting at the time of diagnosis. To help you start the discussion, here are some steps for beginning the advance care planning process. This is by no means an exhaustive list, but it serves as a good starting point for patients and families.

  1. Evaluate quality of life.
    Begin to think about what quality of life means to you. Ask yourself how you want to live. What things are important to you to be able to continue doing throughout your treatment or if you were to become seriously ill?

    2. Have a conversation with your loved ones.
    Discuss your thoughts with the people who would be involved in making decisions for you if you aren’t able to make them yourself. This will ensure that care choices are made to support your quality of life in the way you’d like.
    3. Identify a loved one who can make decisions.
    Which person in your life do you trust to understand what quality of life means to you? Will this person be able to make these decisions if you aren’t able to make them yourself? 

    Make sure this person is willing to take the responsibility of making decisions for you if need be and that he or she knows what’s important to you in your care choices. Don’t assume anything.

    4.  Talk with your healthcare provider.
    Once you have defined your own terms for quality of life and identified someone you trust who would carry out your wishes if needed, discuss all of this with your healthcare provider.  Your physician will be able to provide the medical perspective of your situation and your wishes. 

    Additionally, discussing this with your doctor allows them to be informed about what treatment options you would or wouldn’t want down the road.

    5. Complete the paperwork.
    Once you have made these important decisions and discussed these things with your loved ones and health care provider, it’s important to complete the appropriate legal documents stating your wishes. 

    The Healthcare Power of Attorney (HCPOA) is a document that states
    your wishes about who will make decisions for you.  There are other documents that can be completed, but the HCPOA is a good place to start.

    6. Adjust as the medical condition changes.
    Just because you make these important decisions at the beginning of your disease doesn’t mean you can’t change your mind later. ACP is a process, and it is a good idea to review your ACP each time there is a change in healthcare. As you make updates, it is important to make copies of the updated documents to share with your healthcare agent, medical team, and attorney, and replace old documents that hang on the fridge, your purse, or glovebox.

If you have more questions about ACP or would like help completing your HCPOA, contact your ALS United Chicago Care Service Coordinator for support.

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