Author(s): Paula Rauch; Robert Arnold

The dying of a young adult is always difficult, even more so when there are young children survivors. A common question asked by the dying adult or their family members is, "what/how do I tell the children". Physicians and other health care providers can provide leadership and guidance to help young families through this crisis.

I. Screening and awareness

- Ask if the ill person has children at home; ask about their age, personality, and coping style;

- Ask what the ill person has told the children about the illness

- Ask if they have a specific worry about the child

- Ask if the child has had recent problems in school, at home or with relationships

- Ask who the they would like to talk to if they have concerns

II. Give them some words.

Often a parent's biggest worry is what to say if the child asks if he or she is dying. Here are two examples of words a parent might use. Asking a parent if these words would feel comfortable to say can begin a dialogue between patient and clinician to arrive at language that is honest, and life affirming.

"X" can kill people, but I am taking the best care of myself I can. I am following the doctor's plan so that I can live as long as possible." Or

"Even with trying my hardest and getting the best possible care, my ____ is getting worse; still I plan to live every day."

III. Give adults concrete examples to guide their interactions.

1. Express interest in the child's day.

2. Work to maintain normal routines (e.g. maintain family rituals: Friday night supper, Monday night pizza, watching Jeopardy together).

3. Welcome all questions but do not force discussions. Make sure you understand the real question before answering; take your time to think about how you want to answer.

4. Overhearing bad news is the worst way to hear it. Talk with children from diagnosis onward, being sure to give updates when there are changes in prognosis or treatment.

5. Avoid euphemisms (e.g. lump, boo-boo or sickness) that may confuse children.

6. Ask children to share what they are thinking, or hear from others, so they do not worry alone.

7. Prepare children for visits with the sick person. Describe what they are likely to see. Bring along another adult who is comfortable to stay only as long as the child wants. Bring along markers and paper, so children can leave the parent with a picture or message.

8. Talk to the child's teacher or guidance counselor to alert the teachers. Ask teachers and the child's friends' parents to let the parent know if the child talks about worries.

IV. Refer adults to one of the popular books on the subject (Kroen, McCue)

V. Know the resources for parents and children in your hospital and community

VI. Consider referral to a mental health professional when:

1. symptoms of depression, or anxiety that interfere with school, home or with peers;

2. there is risk taking behavior;

3. there is significant discord between the child and the surviving parent;

4. there is significant discord between the parents; or

5. the child says he or she wants to talk to someone outside of the family.

References:

Rauch, P. (2000). Comment: Supporting the Child within the Family. The Journal of Clinical Ethics 2000; 11: 169-170.
Harpham, W. (1997). When a Parent Has Cancer. A Guide to Caring for Your Children, HarperCollins.
Keeley, D. Telling Children About a Parent's Cancer. BMJ 2000, 321: 462-463.
Krementz, Jill. How It Feels When a Parent Dies. Alfred Knopf.
Kroen, W. C. (1996). Helping Children Cope with the Loss of a Loved One. Minneapolis, MN, Free Spirit Publishing, Inc.
McCue, K. (1994). How to Help Children Through a parent's Serious Illness. New York, St. Martins Griffin.

Copyright Notice: Users are free to download and distribute Fast Facts for educational purposes only. Citation for referencing: Rauch P and Arnold R. Fast Facts and Concepts #47: What do I tell the children? August, 2001. End-of-Life Physician Education Resource Center www.eperc.mcw.edu.