A Self-Advocate’s Guide to Advanced Health Directives

Click the blue questions to read the answer. Last Revised: August 2024

This guide helps you think about your options at the end of your life.
Having a health care plan in place can help people make decisions when you are sick or dying.
It is a written plan for what should happen if you get sick in the future and can’t say what you want for health care.
It is important to tell your family, friends and support people about your health decisions when you are feeling well.
A written form will help guide those who care for you.
They will not have to guess what you want if you are not able to tell them yourself.
An AHD is a way to advocate for yourself.
Step 1:
Talk with your doctor or nurse about what kind of health care you want if you get really sick.
- CPR to restart your heart and keep your blood pumping.
- Breathing machine to pump air into your lungs to breathe for you.
- Feeding tube to try to feed you if you cannot swallow.
- Surgery
- Medicines
Step 2:
Who is a medical decision maker?
A medical decision maker is someone you know who will do what is best for you if you are not able to make your own decisions.
- They must be 18 years old.
- They are not afraid to ask doctors questions.
- You trust them with your medical information.
- They will speak up about your decisions.
- Examples: Parents, a friend, a brother or sister, a neighbor.
Based on your wishes, your medical decision maker can also:
- Call a religious or spiritual leader.
- Pick if you die at home or in the hospital.
- Donate your organs and tissues (heart, skin, liver, lungs, etc.)
- Decide what happens to your body after you die, such as funeral or burial plans.
People with disabilities have a right to make choices at the end of life.
It is your right to share your health choices ahead of time.
Check in with a lawyer if you already have a legal guardian. Talk with them about your end of life decisions.
Step 3:
Write all your wishes down on a form with your doctor’s help.
Write down if you agree to refuse or stop medical treatment if you are not able to speak for yourself.
Try finishing this sentence: “ What matters to me through the end of my life is ______________.”
Answering this question can help you start thinking about what you need to have a good end of life.
For example: Being able to spend time with the ones I love.
For some people, the main goal is to be kept alive as long as possible.
For other people, the main goal is to focus on being comfortable while dying.
For some people, talking about death and dying is uncomfortable.
It’s okay to feel worried or curious about death.
To make sure you have all the information you need, ask a lot of questions.
You can always change your advance health directive before you get sick.
The conversation about dying can continue and change as you grow older.
To get the best care possible, keep your doctors, friends and family updated so they understand what’s most important to you!
To fill out an advance directive, visit: https://vtethicsnetwork.org/medical-decision-making/registering-your-advance-directive-2