Talking About Your Illness with Loved Ones
This guide can help you talk with your loved ones about the future of your illness and about how you are coping now to live as well as possible. It is based on what you have already talked about with your clinician.
Talking about your illness with family and friends may not be easy, but it will help them understand what is important to you. It will also help them support you now and in the future.
Before you talk to your loved ones, think about when and where you want to talk. Choose a time and place when you feel relaxed. Be sure you have time to talk for a while. You can use the words in this guide or use your own words — whatever is easier for you.
Start the conversation:
- I am doing OK right now, and even though there is no rush, my clinicians think we need to begin talking about my future care.
- They believe in being prepared and want to know my goals and wishes for medical care.
- Since you are important to me, I’d also like you to be part of the conversation.
- If at some point I can’t speak for myself, I want you to be able to make decisions for me.
Check in with your loved one:
UNDERSTANDING
- What is your understanding now of where I am with my illness?
INFORMATION
- I know that it may not be easy, but I would like to share information about my illness with you. Is that okay?
- My clinician and I talked about the outlook for my illness–can I share that with you?
How to talk with family or friends:
- HOPES I hope that in the days ahead that I will continue to…
EXAMPLE: feel well for a long time, or that I can get stronger.
- WORRIES I am worried that in the days ahead I…
EXAMPLE: may get weaker, or that time may be shorter than we hope.
- WHAT’S MOST IMPORTANT I’d like to share what is most important to me if my health were to worsen…
EXAMPLE: spend time with family, maintain independence, be comfortable, live as long as possible, fight the illness, die a natural death, not be a burden, be mentally aware, etc.
Talk about how you are coping
- Most people with serious illness swing back and forth between times when they are more worried and times when they are more hopeful. Being worried and hopeful is a healthy, natural part of coping.
- Talking about your coping helps loved ones know how to best support you.
Everyone is different and there are lots of healthy ways to cope. You can use the list included in the downloadable PDF to help you identify approaches to live well despite the illness.
Why is this important?
Thinking about and sharing your wishes will give you more control over your care. It also helps to prepare your loved ones to make decisions for you if you can’t make them at some point in the future. Talking with your family ahead of time will ease the burden on your family of making hard decisions for you if you can’t speak for yourself.
You may find it helpful to bring other people to your visit.
You can choose to bring the person who is your Health Care Agent, other family members, or a close friend to your visit so they can be a part of the conversation.
Talking about the future won’t change your ongoing care.
Talking about the future won’t change the plans we have made so far about your treatment, unless you want it to. We will continue providing the best possible care to treat your illness.
We understand that your wishes may change over time.
This is the beginning of an ongoing conversation and you can always change your mind. We know that you may have other questions or concerns in the future. We will continue to support you and answer your questions so that you can make informed decisions about your care.
