Topic Overview

An advance care plan is a summary of the kinds of health care you do or don't want to have if something happens to you and you can't make health care decisions for yourself. It tells your family and your doctor what to do if you're badly hurt or have a serious illness that keeps you from deciding what you want. An advance care plan also lets you appoint somebody (such as a family member or friend) to make health care decisions for you if you can't make them for yourself. This designated person is called a substitute decision-maker, or a health care representative, agent, or proxy.

It may be hard to know what to include in your advance care plan. Take your time, and use the questions below to help you get started.

Who do you want to make your health care decisions for you?

• Do you have a person in mind, such as your husband, your wife, your partner, your child, or your doctor?
• Can you talk to this person about the kinds of treatments you do or don't want to have?
• Does this put too much pressure on the person to make decisions for you? Do you think that he or she will be able to do what you ask?
• Do you think that your friends, your family, and others will support your decisions?

Do you know enough about the kinds of treatments that can help keep you alive?

• Cardiopulmonary resuscitation (CPR) is used if your heart has stopped.
• A breathing machine that pumps air into your lungs through a tube is used if you can't breathe on your own.
• Dialysis is used if your kidneys stop working.
• A feeding tube or an intravenous (IV) line is used to provide food and fluids if you can't eat or drink.
• Antibiotics are medicines used to treat serious infections.

How do you feel about the use of life support if you:

• Have a serious illness that can't be cured?
• Are in a coma and there is little chance that you'll come out of it?
• Have a long-term illness that gets worse over time and doesn't get better?

What concerns you the most?

• Are you worried that you'll have pain or be kept alive on machines?
• Are you worried that you'll lose your ability to function and live on your own or that you'll be a burden to your family?
• Are there things that scare you? Include your fears or concerns in your advance care plan.

What does quality of life mean to you?

• Do you want to be able to function and live on your own?
• Are you okay with living in a hospital or residential care facility?
• Are you okay with being kept alive by machines?

Do you have any other thoughts about what quality of life means to you and how much control you want to have over it?

Here are some other questions to think about:

• Where do you want to spend the last days of your life? Would it be in the hospital or at home?
• Do you have any health problems right now that affect your way of life?
• Do you want to donate your organs when you die?
• Can you talk to your doctor about end-of-life issues?
• Do your religious or spiritual beliefs keep you from having an advance care plan? If they do, ask your clergy or spiritual advisor to help you know what to do if you can't make health care decisions for yourself.
• Will you be able to practice religious rituals before you die? In some religions, rituals are done before or after a person dies. If you want certain rituals to be done and know who you want to do them, write them in your advance care plan. For safety reasons, some hospitals may not let you do certain rituals.
• Do you want to include your beliefs and thoughts about illness, dying, and death?

You may find it hard to answer some of these questions. Here's a way to help make things more clear.

Try to picture yourself in each of the situations listed below. Then think about what you would like to happen in these situations if you were not able to choose what you wanted. As you read through each example, write down any thoughts that come to you.

• What if you had a disease that couldn't be cured? Would you want to be given antibiotics to get rid of an infection, such as pneumonia, that might lead to your death if it's not treated?
• What if you had a disease that gets worse over time and affects your movement or memory, such as Parkinson's disease or Alzheimer's disease? Would you want to be given food and fluids through a tube? If so, is there a time when you would want to stop this treatment?
• What if you were in pain? Would you want to be given strong doses of medicine to ease it, even if they make you groggy and not able to think clearly?
• What if you were in a coma and there was little chance that you would come out of it? Would you want to be kept alive by a machine that pumps air into your lungs through a tube if you can't breathe on your own?

Try this exercise again with a few more "what if" situations. This time you might think about what your doctor says about your chances for recovery and how that might affect what you decide to do. You may see some patterns develop that can help you decide what to include in your advance care plan.

These decisions are tough to make, but you don't have to make them alone. Look to your family, your doctor, and your friends for help and support.