ELIZABETH JOHNSON had some bad news for her children, ages 8, 7 and 4. During a hospitalization for COVID-19 in November 2020, doctors did a CT scan and discovered malignant tumors in the rural Minnesota homemaker’s lung. Johnson had been treated previously for stage II breast cancer in 2017, but now she had to tell her children about a diagnosis of stage IV metastatic cancer.

“I explained that the doctors had found some more cancer in my lung,” says Johnson, 32, who currently shows no evidence of disease. She did not tell her children that her new diagnosis raised her risk of dying from cancer. However, after a family friend died of breast cancer, Johnson’s 7-year-old daughter said, “I’m glad you don’t have the kind of cancer that kills you.” Johnson replied, “I do, sweetheart, but right now I’m doing well, and I will let you know if that changes.”

Telling your child that you have advanced cancer can be tough. It requires walking a fine line between what a child needs to know and what they can understand, which varies depending on developmental age. Such talks can prepare children so they aren’t blindsided by a parent’s death and also allow them an​ opportunity to ask questions and voice concerns.

Johnson, who was first diagnosed with cancer at age 27, has often talked to her children about her cancer. Revealing her advanced cancer was a continuation of those discussions, but experts suggest the general guidelines for talking to your child about an advanced cancer diagnosis remain the same, whether children have prior knowledge of cancer or not.

Be honest. Bonnie Zucker, a psychologist in private practice in Rockville, Maryland, and the author of a children’s book for toddlers to help them process the death of a loved one, says, “We want to be honest with kids. If the odds are not in favor of surviving cancer, we need to gently let them know.” She suggests using language such as, “I can’t guarantee that this is going to work out. We’re praying and hoping it does.”

Be age appropriate. Most children don’t understand what death is until after they are 6 or 7 years old, “but it’s very individual with each child,” says retired psychologist Kenneth J. Doka, senior vice president of grief programs for the Hospice Foundation of America, a Washington, D.C.-based nonprofit. Children between the ages of about 7 and 9 may ask about death. If they do, answer them honestly, says Zucker, but otherwise don’t volunteer the information. Children 10 and older generally have a higher level of understanding, she says. If survival is unlikely, she advises being transparent with them.

Avoid specific timelines with younger children. If the child is under 5 or 6 years old, they likely will be confused and anxious if they are told their parent will live six to 12 months, says Rebecca Hobbs-Lawrence, the grief services coordinator at Dougy Center: The National Grief Center for Children & Families in Portland, Oregon. “Time has a very different meaning to small children,” Hobbs-Lawrence says, noting that a small child might repeatedly ask, “Is Mommy going to die today?” She suggests speaking in generalized time frames for smaller children. “The doctors don’t have any more medicine for me. I’m going to get sicker and I’m not going to live as long as I had hoped.”

Answer your child’s questions. Doka says to focus on “what the child wants to know, needs to know and is capable of understanding. Also, make sure you know what the child is really asking and what the context is.” Sometimes, he says, children will ask a question such as, “Will Daddy die?” while leaving other questions unspoken, such as, “How will this affect me? Who will take care of me?” He suggests seeking your child’s feedback and asking what they are worried about. If your child overwhelms you with “a million questions,” says Zucker, ask the child to write them down. This gives you time to think about how to answer them with sensitivity to the child’s needs.

Avoid euphemisms. Use words like “die” or “dying” rather than “pass away” or “go to sleep,” which can confuse children, says Hobbs-Lawrence. Also, “going to sleep” may cause children to fear that their parents will die in their sleep or to be afraid of going to sleep themselves.

Make it an ongoing conversation. Talking about your cancer diagnosis should not be a one and done. “It’s a process,” says Zucker. ​You may find questions cropping up during car rides or at bedtimes as children process what’s happening.

Don’t fear tears. Crying while telling your child about ​your diagnosis is normal. “I don’t know how people get through this without crying,” says Hobbs-Lawrence. She says it’s important to show children that it’s OK to cry. “A good family cry is very healing,” says Johnson.

Be true to your beliefs. If you believe in heaven, share this with your child, but don’t pretend if you don’t believe, advises Doka. “If your faith is that you know Dad will always live in our hearts, that’s what you share.”

Having frank, open dialogue with your children can draw your family together. “It brings you closer,” says Johnson. “Your appreciation of each other grows when you’re having these hard talks.” And your children benefit by being prepared for whatever might come next, she adds. 

Lorna Collier is a health writer based in northern Illinois.

​​
Cancer To​​day magazine is fr​ee to ca​ncer patients, survivors and caregivers wh​​o live in the U.S. Subscrib​e here​​ to receive fou​r issues per year.