So you’ve decided to think about and share your wishes for medical care… and the person who you want to talk to doesn’t want to hear it. What do you do?
Here are some ideas:
- Warm them up. Introduce the topic before you have the conversation. Suggest another time to sit and talk about it later. For example, you might say: “I’ve been thinking about some things I want you to know about my future health care decisions. I’m hoping we can talk about it sometime this week — maybe during our planned [call/walk]?”
- Choose a comfortable setup. For example, find cozy chairs or pick a sunny day for a walk. Be mindful of emotional comfort, too. If your person prefers to talk about difficult topics in private, don’t start a conversation in a public space.
You might suggest talking at the kitchen table, at a favorite restaurant, in the car, on a walk, or on a video or phone call.
- Use what you know. Think about your person. Are they a reader? Try sending them a related article or blog. Do you bond over activities? Play a game or watch a movie that can help jumpstart the conversation.
- Focus on your values. Explain that you want to talk about what’s important to you, in life and in your health care, in case you can’t speak for yourself. This can be about how you want to live your life through the end — not a focus on death and dying.
- Start with a story. Share a memory of a time when someone you know was or was not able to make their own decisions. How did you feel? What went well? What was missing?
- Pick one question from our guides. You may not be able to have a really long conversation with this person. Think about one or two things that feel most important for your person to know the answer to if they need to advocate on your behalf someday. For example, you might answer this question:
- Try some of these phrases. Use whatever language feels right to you that might help your person be more comfortable. For example:
- “I need your help with something.”
- “Can you and I have a conversation about ____?”
- “Will you help me figure out my future?”
- “I was thinking about what happened to ____, and it made me realize ____.”
- “I heard about the Conversation Project and answered some of their questions about things that matter to me when it comes to my care through the end of life. I’d like to talk to you about it.”
- “I want to make sure you know how I feel.”
- Choose a proxy who can honor your wishes. A health care proxy is someone who would make health care decisions on your behalf if you are not able to speak for yourself. Choose someone who you think will listen to you and talk with you about what matters to you. (For more information, see our Guide to Choosing a Health Care Proxy.) Be sure to let other people in your life know who your proxy is so there isn’t confusion.
For example, for a community member in Hawaii, her husband found these conversations too difficult to have. She realized he wouldn’t be comfortable being her proxy. She chose someone else to talk with about the specifics and made sure he knew it was taken care of. He didn’t need to know everything, but was glad to know there was a plan.
- Put it in writing. Share an email, text, or letter with all the people you think might need to know who you choose as a proxy and some key things you want everyone to know. You could even record a short video. One community member sent a text to her adult child about her wishes for care if she someday has dementia. Her child took a screen shot and saved it.
By sending the same message to multiple people, you increase the likelihood that someone will remember it and be able to access it. Make sure you share a copy with anyone who can help you have a say in your care, including your health care team.
Here are two different examples:
- In a short video, Karen Boudreau reads the note she wrote to guide and reassure her loved ones in case they need to make medical decisions for her, titled “Don’t Panic – It’s Okay.”
- In a detailed letter, Katy Butler explains exactly what she would want if she is no longer able to make decisions about her health care due to dementia.
- Make it official. Record your wishes with a legal document called an advance directive. In an advance directive, you describe your preferences and wishes for your health care if you cannot speak for yourself. The website Caring Info can help you find the right forms in your state. And the website PREPARE for your care has step guidance and resources to help you. Your doctor’s office should also be able to provide you with the form. It isn’t necessary to work with a lawyer on these documents – but consulting one might make you feel more comfortable. Keep it up to date over time — your preferences may change as your situation or your health changes.
If your person really doesn’t want to talk, you may take a pause. You can still leave the door open for possible conversations in the future. You might say:
- “Sounds like you don’t want to talk about this right now. I’m going to respect that.”
- “If you’re up for it another time, I would really like to be able to share my wishes with you. If it’s easier, I could send you an email or record a video for you. And then we could talk.”
You can’t force anyone to have these conversations. If in the end your person isn’t willing to talk about it, you can choose someone else to have these conversations with and serve as your health care proxy. Let your person know who it is, so that it’s not a surprise to your person if someday your proxy needs to make decisions on your behalf. You might say:
- “I want you to know that I chose (name) to serve as my proxy. That means they will make health care decisions for me if I am unable to speak for myself. We talked and they know what matters to me and my wishes. I want you to be able to focus fully on our time together, rather than on health care decisions that may cause you stress.”
What has been helpful for you to engage people you care about in talking about what is most important to you? Share in the comments below.
You may also be interested in: 11 ideas for when someone is having a hard time talking about their wishes for health care.
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