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Telling Your Children About Your Terminal Illness

by Amy Scholten, MPH

En Español (Spanish Version)

Many people with serious illnesses have school-aged children or teens. It hurts children to see their parent go through such a difficult time. It can be hard for a parent to know what to tell the children about the illness. It is even harder to tell them that a parent is going to die. Even so, it is important to tell the children what is happening. This can help them prepare and cope better. The good news is that there are many resources to help.

Tell Them the Truth

First, tell your children the truth. This is hard because you want to spare them from pain. However, if children are not told the truth, it can cause them even greater pain. They may imagine even worse situations or blame themselves. Children can often see what is happening. But if no one talks to them about it, they cannot express how they are feeling. Children need to be able to trust what you tell them—whether the news is good or scary.

Children may express many emotions, depending on what they understand. They need your help to get through the tough emotions. If you can help them, they may be less apt to act out in negative ways.

How to Tell Them    TOP

Obviously, telling a child about a serious illness can be very difficult for a parent. The most important thing is to be honest.

You won't have to have all the answers. Try to break up the conversation. Let your child take the lead. They may already know more than you realize. It's more important to establish and open line of communication. Because younger children learn by repetition, and older children may have questions, be prepared to talk about the same information repeatedly.

When to Tell Them    TOP

It's best to inform your child of your illness as early as possible. Even though they may not fully understand the concept of death, they will likely understand about illness and see how it affects the family dynamic. It's also possible they have a friend or classmate who is in the same situation. If you start the journey at the beginning, they will better manage changes as they happen.

If your child has known the ins and outs of your illness, you may be able to explain that what you have been doing in the past is no longer working. Find a quiet time when you won't be interrupted. Try not to have the discussion when other things are going on, such as getting ready for school in the morning, or before bed at night.

Keep the Changes to a Minimum    TOP

Since children need and crave structure, try to keep things as normal as possible. If a relative offers to help with the children, have them stay at your home instead of the other way around. The ability to stay in their own bed, play with their friends, go to school, and participate in extra-curricular activities makes a big difference in helping children cope with the other changes in routine, such as doctor's appointments or a parent who is too tired to play or is losing hair.

Stick to the Rules    TOP

Parents are not doing their children any favors if all the normal rules of behavior go out the window. In the end, you are still the parent, so try to keep the routine at home as normal as possible. This includes chores and discipline.

Prepare for the Tough Questions    TOP

Be prepared to answer tough questions, because the experts agree that they are going to come. For example, they may ask direct questions about death or wonder who will care for them after you 're gone. Prepare yourself to answer these and other questions when they want to talk.

You may want to rehearse some answers. Practice answering the difficult questions such as; how long you have, what will happen if your cancer comes back, or who will take care of me if you die. If they make a big deal about it, pay attention to that.

Time is altered in a child's mind. They may not understand that the course of terminal illness or the treatments may last for weeks or months.

When It Is Time to Get Help    TOP

Children experience stress and grief at significant moments, like when they get up and Mom is not there to make them breakfast. While adults act sad when they are depressed, children may become agitated; what parents and teachers might call acting up may actually be signs of depression.

Experts say that any significant change in behavior that lasts for more than 2 weeks may indicate that a child could benefit from counseling. Those changes could include acting-out behavior at school, changes in the way they play with their friends, difficulty sleeping, and loss of appetite.

The following behavior problems require immediate attention from a professional counselor:

  • Dramatic change in school performance
  • Drug or alcohol abuse
  • Self-mutilation
  • Violent behavior toward others
  • Eating disorders
  • Criminal or risk-taking behavior, such as shoplifting, speeding, driving under the influence, or picking fights
  • Suicidal tendencies

Life Lessons    TOP

Regardless of the prognosis, parents can use the illness to teach their children positive life lessons. King's son Mitchell combined his experience with his mom's breast cancer and his love of art to create the Kemo Shark Comic Book, which has been distributed to thousands of children facing the same issues he did. He helped his mom put together a video called "My Mom Has Breast Cancer" that has helped other moms talk to their kids. He also plays baseball and basketball, but decided to pass on the football.

RESOURCES:

Gilda's Club New York City
http:// www.gildasclubnyc.org

Kids Cope, Inc.
http://www.kidscope.org

CANADIAN RESOURCES:

Canadian Cancer Society
http://www.cancer.ca

Canadian Psychiatric Association
http://www.cpa-apc.org

REFERENCES:

How do I talk to my children about dying? American Cancer Society website. Available at: https://www.cancer.org/treatment/children-and-cancer/when-a-family-member-has-cancer/dealing-with-parents-terminal-illness/how-to-explain-to-child.html. Accessed November 18, 2021.

Telling a child when a loved one is dying. Sue Ryder Palliative Neurological and Bereavement Support website. Available at: https://www.sueryder.org/how-we-can-help/terminal-illness-information/families-and-carers/telling-a-child. Accessed November 18, 2021.

When to tell the children: preparing children for the death of someone close to them. Canadian Virual Hospice website. Available at: https://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/Communication/When+to+Tell+the+Children_+Preparing+Children+for+the+Death+of+Someone+Close+to+Them.aspx. Accessed November 18, 2021.



Last reviewed November 2021 by EBSCO Medical Review Board
Last Updated: 11/18/2021

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