Telling Your Children About Your Terminal Illness

After Dr. Elizabeth King was finished with her treatment—double mastectomy, chemotherapy, stem cell mobilization and reinfusion, and radiation—she sat outside her Atlanta home and watched her 8 year old son, Mitchell, skate in the driveway. After more than 9 months of dangerous and debilitating treatment for breast cancer, she enjoyed just feeling the sun on her face as her son showed off some new moves.

The conversation turned to Mitchell's request to play football in the fall. Given the injury rate in the sport, King and Mitchell's father were not keen on the idea. Mitchell skated over and sat down beside her.

"He looks at me and says, 'You know, I think I'm going to play football,'" King recalls. "'I want to scare you as much as you scared me.'"

When Kids Are Scared

A child psychologist, King told her son that she did not blame him for being mad and scared. While she was impressed by his ability to express his emotions so clearly, she was overwhelmed by the pain and fear her illness had caused him.

When a parent has a serious illness, it hurts children too. The American Cancer Society estimates that about a third of patients with cancer have school-aged or adolescent children. Fortunately, a host of resources are available to help parents help their children.

Tell Them the Truth

First and foremost, tell your children the truth. If children are not told the truth, their imaginations are likely to conjure up even worse scenarios, and they may blame themselves. When a child is not told what is happening—but can see the evidence all around them—they cannot express how they are feeling. If children cannot trust what you tell them when the news is scary, they will question whether you are telling the truth when there is good news.

Children may express an array of emotions with different layers of comprehension. If you help them through the rough spots, they may be less apt to act out in negative ways.

How to Tell Them

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

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

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

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

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

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

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.

Revision Information

• Reviewer: EBSCO Medical Review Board Michael Woods, MD, FAAP
• Review Date: 09/2017
• Update Date: 09/23/2015