One of the most important steps in advance care planning is talking about your wishes with the people who might be asked to speak for you. Even if you don’t complete a formal advance directive, it’s important that you speak about your wishes clearly with your spokesperson, loved ones, and health care providers.
Talking with other people can also help you think about what you want. Often, friends and family members can ask you questions or tell you things that will make you think about your wishes in a different way.
It will be easier for everyone to follow your choices if you are able to say what you want thoroughly and clearly.
You should choose a spokesperson – a person who will make decisions for you if you are unable to make them for yourself. But there may be other people you should talk to as well. Think about the people who are important to you. Then try to imagine being seriously ill or injured and unable to communicate. Who would you want to be involved at such a time? These are the people you should share your feelings with now. This can help prevent confusion, conflict, and hurt feelings later.
In addition to your spokesperson, you might also want to talk to:
There is no "right" way or "right" time to start this conversation. The best thing to do is set a time and get started. But what if your spokesperson or loved ones don't want to talk? What if they make excuses like, "You've got a lot of life left in you. Why do we have to talk about this now?" Here are some suggestions for getting a conversation started:Relate a story you read here.
If there was a story from this website that resonated with you, it may also get the attention of the people with whom you want speak. Share the story with them and the questions it raised. Let them know what you are concerned about and why this is important to you.
Kenji Nakamura wanted to appoint his daughter Suzy to be his spokesperson. The first time he tried to talk to her about this, she said, "Dad, you're going to live to be 100 years old! We don’t need to talk about this now." The next time she came over, he eased into the conversation by talking about the things he was thankful for, like his health. Then he asked her to look at the statement of his wishes that he’d been writing. Suzy was surprised to learn that her dad didn't ever want machines to keep him alive.
She said, "What if you needed a breathing machine for only a few days?" After talking about it, they both had a better understanding of his wishes. He didn't want to be kept alive on a breathing machine forever, but it would be OK for a short time.
Remind them of a situation someone else experienced.
Another way to introduce the topic is to think about friends or relatives who had an illness and faced a difficult situation.
"Do you remember what happened to [name of person] and what his family went through? I don't want you to have to go through that with me. That’s why I want to talk about this now, while we can."
Be firm and straightforward.
If someone puts you off because they are uncomfortable, you could say
"I know this makes you feel uncomfortable, but I need you to hear what I have to say because it's very important to me."
Point out the possible consequences of not talking now.
Someone may be more willing to talk if you start by saying something like,
"If we don't talk about this now, we could both end up in a situation that is even more uncomfortable. I'd really like to avoid that if I could."
It may be easier for people to hear what you have to say at first if you aren't there. So you could ask them to read a personal letter, listen to an audio tape, or watch a video in which you express your feelings and wishes. Afterward, they may be more ready to sit down and talk with you.Find Out More
Whether or not you decide to complete an advance directive, it's still important to talk to your health care team. Here's why:
You don't want to be in a hurry when you have this conversation. Make a special appointment with your health care providers to make sure that you have their attention and sufficient time for the discussion.
Doctors and nurses are people, too. Some are uncomfortable talking about advance directives or have other things on their minds. Research has shown that almost all patients want to discuss their future health care preferences, but many times their health care providers don’t start the discussion. You can be gentle but assertive when you let your health care providers know that you really want to have this conversation.
Don't let your health care providers file your advance directive in your chart without discussing it with you. Make sure they know why you feel the way that you do. This will make it easier for them to understand and follow your wishes.
Bring a copy of your advance directive and any worksheets you chose to complete from this website. You can also share your personal letter or audio or video recording, if you have created one. This will help you organize your thoughts and cover all the important topics.
During your appointment, you may want to ask some or all of these questions:
"Is it likely that I will lose my ability to make my own decisions because of my medical condition?"
"What difficult treatment decisions am I likely to face in the future because of my medical condition? What are the pros and cons of the different options?"
"Can I count on you to listen to my spokesperson if I can’t speak for myself?"
"What will happen if you’re not the health care provider who’s there when I need care? How will my other health care providers know about my wishes?"