If you have a terminal cancer diagnosis (also called metastatic or end-stage cancer) or your disease has progressed to this point, you'll want to talk about future steps and what to expect with your health care team and family members.
Having these talks may not be easy. But knowing your options will make it easier for you to move forward with your care. You can hope for the best while still being informed about your choices. (Your loved ones may also want to go to our caregiver section for more tips on talking about advanced cancer.)
Talking to Loved Ones about Advanced Cancer
When you tell your loved ones that your cancer is terminal, they may need time to adjust to the news. They need to come to terms with their own feelings. These may include:
Everyone copes with bad news in their own way. Knowing this will help you understand their feelings. Let people know that the best thing they can do for you is to be themselves and feel at ease with you. Ask them to listen when you need it, rather than try to solve every problem. Many people are comforted by sharing feelings and taking the time to say what they need to say.
Keep in mind that not everyone can handle the thought that they might lose you. Or some people may not know what to say or do for you. As a result, relationships may change. This isn't because of you, but because others have trouble coping with their own painful feelings.
Some things you could say if you'd like to:
It's also okay if you don’t feel comfortable talking about these issues. What you say to others is up to you. You also get to decide when or if you want to respond at all.
See NCI’s Planning the Transition to End-of-Life Care in Advanced Cancer for additional information on care decisions and end-of-life planning.
Talking with Your Spouse or Partner about Advanced Cancer
Talking about serious issues is never easy. It's hard to face an uncertain future and the possibility of death. Often people are uncomfortable or don't know what to say.
It’s likely that you and your loved one are both having the same thoughts and fears about the end of life. With an end-stage cancer diagnosis, there will come a time when you will need to talk about these issues together. These might include:
There is no right or wrong way to communicate. But studies show that people who talk things out feel better about the care they get and the decisions they make. A few things to remember are:
If you have trouble talking about these issues, ask for professional advice. A counselor or other mental health expert may be able to help you and your loved one explore topics that you don’t feel able to on your own. You can also talk about other concerns and feelings that you are dealing with right now.
Talking with Your Children about Advanced Cancer
Children of all ages can sense when things are wrong. Keeping your children's trust is still very important at this time. It's best to be as open as you can about the fact that your cancer is terminal. They may worry that they did something to cause you to get sick. They may be afraid that no one will take care of them. They may also feel that you are not spending as much time with them as you used to.
Some children become very clingy. Others get into trouble in school or at home. Let the child's teacher or guidance counselor know what is going on. It helps to keep all the lines of communication open, both with your kids and with the other people in their lives.
Although you can't protect them from what they may feel, you can prepare them. If they ask if you are going to die, you can tell them the truth with comfort and understanding. What you tell them and how they take it will depend on their age and what they have gone through already in life. While you can't protect them from pain and loss, you can help them cope with it and understand it as part of life. Try to:
Talking with Your Teenagers about Advanced Cancer
Many of the things listed above also apply to teenagers. They need to hear the truth that your cancer is end-stage. This may help them from feeling guilt and stress. But be aware that they may try to avoid the subject. They may become angry, act out, or get into trouble as a way of coping. Others simply withdraw. Try to:
If you have trouble talking with your teen about your cancer, you might want to ask for help. Try asking a close friend, relative, or health care provider for advice. You could also go to a trusted coach, teacher, or youth minister. Your social worker or doctor can help you as well.
Talking with Your Adult Children about Advanced Cancer
Your relationship with your adult children may change when you learn that you have terminal cancer. You may have to rely on them differently than you have in the past. It’s a normal reaction if you find that this is hard for you. Many people find this difficult. After all, you may be used to giving support rather than getting it. Or it may be hard for other reasons. Perhaps your relationship with your children has been a more formal or distant one.
Adult children have their concerns, too. They may become fearful of their own mortality. They may feel guilty because they’re overwhelmed by the many demands of their lives as parents, children, and employees and unable to be there with you as much as they want.
As your illness progresses, it helps to:
Reaching out to your adult children and openly sharing your feelings and wishes may help them cope with your cancer. It could bring you closer to them as well. It may also help lessen any fears or conflicts that may arise between siblings when important decisions need to be made.
For more detailed information on talking to children about cancer, see the NCI booklets, When Someone You Love Is Being Treated for Cancer and When Someone You Love Has Advanced Cancer.
Talking to Children about Death
Children of all ages may wonder about dying, life after death, and what happens to the body. If someone close to them has advanced cancer, their world may be changing monthly, weekly, or daily. That’s why it's important to be honest with them and prepare them each step of the way.
It's important to answer all their questions. If not, they may imagine things or make up their own stories. Let them know that everything is being done to keep you comfortable.
Tell them the truth. Children deserve to be told the truth about a poor prognosis. Hiding the truth from them leaves them unprepared for your death and can prolong the grief they will feel. And if you don't talk about your condition or don't tell the truth about it, your children may have a hard time trusting others in the future.
By including children in the family crisis, you can give them healthy ways of coping with what is happening. You can show them how to hope for the best while accepting the likely outcome of death. If you're honest and up front, you're teaching them that death is a natural part of life. Your honesty shows them it’s okay to talk about death.
Counselors and oncology social workers can also suggest ways to talk to kids about death in ways they understand. They may know of local or national programs that offer help to children in these situations. Or they may suggest books, videos, and websites that explore these topics.
Family Disagreements with Advanced Cancer
Any problems your family may have had before the cancer diagnosis are likely to be more intense now that you have learned the cancer is terminal. And relatives that you or your family members don't know very well or who live far away may be around more often, which may complicate things.
It's common for families to argue over things such as:
Although everyone may be trying to do what's best, some family members may disagree as to what this means. Everyone brings their own set of beliefs and values to the table, which makes these decisions hard. It’s common for families to ask their health care team to hold a family meeting or to help with communication in some way.
Ask for Help or a Family Meeting
Often, talking with the people closest to you is harder than talking with anyone else. Some families are good at communicating with each other. And others have trouble expressing their needs to each other, even if they get along very well. Or sometimes families simply don’t get along.
If you don't feel comfortable talking with family members, ask a member of your health care team to help start a conversation. You could also ask a social worker or other professional to hold a family meeting. This may help family members feel more comfortable to openly express their feelings. It can also be a time for you and your family to meet with your team to solve problems that may have arisen and set goals.
It can be very hard to talk about the goals for care when someone has terminal cancer. But studies show that cancer care goes more smoothly when everyone stays open and talks about the issues.