patient education : 18005--Introduction to Advance Care Planning

Introduction to Advance Care Planning (ACP)

At UVA, the patient is at the center of all we do.  Your healthcare team wants to know what kind of care you want even when you cannot tell us.  You always have a say in the healthcare you receive and it’s important for you to make a plan in case you have a sudden accident or illness that leaves you unable to speak for yourself. You can’t plan for everything, but you can decide who you trust to make those healthcare decisions for you when you are unable. See “Things to Consider When Naming a Healthcare Decision Maker.”

Your healthcare decision maker should make the same decisions for you that you would make for yourself so it’s important to talk with your healthcare decision maker about what matters most to you.  Doing this gives you power over your healthcare decisions even if you lose the ability to speak for yourself.  See “What Does your Healthcare Decision Maker Need to Know?”

Things to Consider When Naming a Healthcare Decision Maker

The person you name as your healthcare decision maker should be someone close to you who is:

• willing to speak for you if you can’t speak for yourself.
• willing to talk with you now about the kinds of decisions you want to be made if you are ever severely hurt or very sick and can’t make decisions for yourself.
• willing to follow those decisions.
• able to think and communicate clearly in a stressful situation.
• able to make sure everyone (other loved ones and the healthcare team) understands your decisions.

In Virginia, if you do not name a healthcare decision maker in a legal document and you do not have a Court appointed Guardian, your Legal Next of Kin will be asked to make decisions for you in the following order.

1. Spouse (even if you are separated unless a divorce action has been filed with the court)
2. Adult Children (all your children have to come to an agreement)
3. Parents
4. Adult Siblings (all your siblings have to come to an agreement)
5. Other blood relatives (aunts/uncles; nieces/nephews; cousins etc.)

Appointing a Health Care Decision Maker. 

To make sure the person you trust to make health care decisions for you is able to make those decisions if you can’t make the decisions for yourself, you will need to complete an advance directive appointing that person as your health care agent. 

What Does Your Healthcare Decision Maker Need to Know?

You may want all possible medical treatments if those treatments will lead to a meaningful recovery.  When meaningful recovery becomes very unlikely and/or when treatments become too burdensome, you may want to shift care to focus on pain relief and symptom control and quality of life rather than focusing only on more time or quantity of life. 

Once you have named a healthcare decision maker, have that person ask you the following questions so you can describe what a meaningful recovery looks like to you and if there are circumstances under which you would want to focus on quality rather than quantity of life. 

For everyone, regardless of level of illness:

What experiences have you had with people who have been very ill and what did you learn from those experiences? 

What abilities are so important to you that you can’t imagine living without them?

Are there circumstances under which you would want your care to focus on quality of life over quantity of life?  If so, describe those circumstances. 

If you ever become very ill, are there limits on what you would be willing to go through for the possibility of gaining more time?

For people with serious illness:

What gives you strength as you think about the future with your illness?

What are your biggest fears and worries about the future with your health?

What are your most important goals if your health situation worsens?

If you ever become so ill that it is very unlikely that medical treatment will return you to a level of mental and physical function that is good enough for you, would your goal be more time or better quality of life for the time you have left?