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 yourself.  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. 

Information about completing an advance directive can be found on our UVA Health website.  Please copy and paste the following address into your browser

https://www.uvahealth.com/patients-and-visitors/advance-directive

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 decided on a healthcare decision maker, it’s time to start the conversation.  Here are some helpful ways to begin: 

 "My doctor talked to me” or “I’ve been thinking” about advance care planning recently and I realized that I need to appoint someone I trust to make health care decisions for me if there comes a time when I can’t make them for myself.  Would you be willing to talk with me about this? 

After seeing what happened when [a friend/family member] became ill, I realized how important it is to choose someone to make healthcare decisions and to talk about the kind of care I would want if I am ever that ill. Would you be willing to talk with me about this? 

I hope this never happens, but if I became too sick or injured to make my own medical decisions, I would want someone I trust to speak for me. I was wondering whether you would consider being that person, and I'd like to talk about what that would involve.

Have you ever thought about who would make medical decisions for you if you became really sick or were in an accident and couldn't make decisions for yourself?

Once someone agrees to be your healthcare agent, 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.

• What experiences have you had with people who are seriously ill and what did you learn from those experiences? 
• What brings your life meaning? 
• What are you willing – or not willing – to go through to live longer?
• What level of physical loss of function would you be willing to live with in exchange for more time?
• What level of mental loss of function would you be willing to live with in exchange for more time?
• What abilities are so important to you that you can’t imagine living without them? 
• What are your biggest fears or worries when it comes to your health?
• What matters most if you only have weeks to months to live?
• Under what circumstances might you choose to have your care focus on comfort rather than on living longer?