Clara Was 8 Years Old. And She Was Dying of Cancer

October 9, 2018


“In a moment of insight, Kathy realized Clara didn’t need more medication.”

Clara was eight years old. And she was dying of cancer.

Her curative treatment had come to an end and her parents decided to discharge her from Doernbecher Children’s Hospital and return to Southern Oregon so Clara could live out her final days in her own room, surrounded by her own toys and stuffed animals, and her family.

But something was wrong.

Once Clara’s parents brought her home, they quickly realized that no matter how hard she tried, Clara couldn’t fall sleep.

Night after night, she would come to the edge of sleep and wake up.

Her parents, quite understandably, were puzzled. Was this somehow related to the cancer that was overtaking her body? Was it a side effect of the pain medications she was taking?

But night after night, Clara continued to lie awake.

Desperate to help their daughter, Clara’s parents called Kathy Perko. Kathy was a nurse practitioner at Doernbecher. After describing to her Clara’s insomnia, they asked Kathy, what do you think we should do?

As Kathy sat there and listened to Clara’s parents, she was preparing her response. Normally, that would be “there’s a drug for that.”

Kathy knew she could give Clara sleeping medication which surely would help her drift off to sleep. She could increase the amount of narcotics Clara was taking. Surely, this would calm her enough to allow sleep to once again appear in Clara’s life.

But in a moment of insight, Kathy realized Clara didn’t need more medication.

She asked her parents a simple but profound question, “have you asked Clara why she won’t fall asleep?”

After a moment of silence on the line, Clara’s parents said no, we haven’t. And in a moment of collective insight, Kathy asked them to take the phone into her room.

“Let’s ask her.”

And so they did. Together, they asked, “Clara, why aren’t you falling asleep?”

“Because I’m afraid death will come for me when I’m asleep.”

Clara’s response, shared with no hesitation, shocked them all. Clara didn’t need medication. She needed to know that she was going to be okay.

Her parent’s, along with Kathy, wondered what they could do or say to reassure Clara that no matter what happened to her while she slept, she was going to be okay.

After hours of pondering, they had a solution.

That night, Clara’s parents walked into her room holding a pair of angel wings.

They told Clara, “wear these so that if you go to sleep and death comes for you, they will carry you to heaven.”

Clara went on to sleep soundly again. She wore her angel wings for the remainder of her days.

Sometimes, as caregivers, the most healing thing we can do is not a medical thing. Perhaps the most profound thing we can all take away from Clara’s very true story is that finding the right thing always starts with asking.

Mark B. Ganz is President and CEO of Cambia Health Solutions, where he guides its path to delivering a seamless, end-to-end, health care experience. He is a past chairman of the board for America’s Health Insurance Plans, and currently serves on the board of directors for the Blue Cross and Blue Shield Association. He shared this story during his 2017 End Well talk.

This article is part original, part transcript of the 2017 End Well Symposium talk given by Mark B. Ganz. You can view Mark’s full End Well talk here.

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