Tuesday, March 9, 2010

A Young Breast Cancer Survivor Talks About Discussing Chronic Conditions with Children

The other day in my office, I met with a long-term patient of mine: a woman whose second child I'd delivered. Some time later -- when she was only about thirty-three, she received the diagnosis of breast cancer. Now, after a number of surgeries, chemotherapy, and radiation therapy, she is nearly six years post-diagnosis. She has become active in a group called "Young Survivors." While breast cancer is less common in younger women, it can be more aggressive.

Young Survivors have a unique perspective. We "expect" to confront health issues in midlife and beyond. But issues involving children take on a different intensity when the children involved are pre-schoolers rather than teens or young adults.

Here are some of the recommendations she and I discussed about talking with kids about ongoing health issues, and the points certainly apply to ESRD and dialysis.

1.  Be honest.

2.  Tell what you know in age-appropriate language.

3.  It's okay not to know all the answers, but tell your kids you'll update them promptly when you do have information.

4.  Don't let your kids learn critical information from other people: they don't know the real story.

5.  Tell your kids: "Get your information from me. I will tell you what I know to be true." It's a good idea to designate an alternative source: "If you can't find me, ask Aunt Carole."

6.  Acknowledge that it can be scary not to have all the information. You may be frightened, too.

7.  Point out that every medical situation is different. "Cancer" is different in every patient.

8.  Never underestimate the power of "snippets" of information -- a one-sentence factoid delivered on a car ride will be rememebered later and it can be the grounds for later discussion.

9.  Remember that kids have a way of feeling responsible for things over which they have no control. They may make up explanations..."If I had cleaned up my room, you wouldn't be sick."

10. Expect a child to ask, "Are you going to die?" It's a fair question. Your answer, of course, depends on the specifics. It could be "I hope not," or "No, this is somethting we will have to go to the doctor from time to time to help us watch. But, I'm planning to be here for a long time." Etc.

Children and creative adults will make up information if they aren't included in the truth; their versions may be worse!

My sincere thanks to my young patient who uses her life experience in the most important way: helping others!

Take care. Linda Gromko, MD
PS - No HIPPA violation here; my patient was very willing to be represented in this blog.


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