How do you break bad news to kids about their health? Doctors say keep it honest, simple

abredeson@islandpacket.comMay 22, 2012 

Jillian Kaufman and her daughter Kaylani are pictured at their home on Lady's Island. Five-year-old Kaylani suffers from large granular lymphocytic leukemia.

JONATHAN DYER/THE BEAUFORT GAZETTE

In February 2011, Kaylani Kaufman became lethargic and lost all interest in eating and drinking. Her belly was hard and her neck swollen. The outgoing little girl couldn't even speak.

Her mother, Jillian Kaufman, of Lady's Island, took her to Beaufort Memorial Hospital, where doctors performed a CT scan.

"I knew something was wrong because the doctor and the nurse came in, and they said, 'Can we talk to you outside of the room?' " Kaufman said.

The doctor said there was a possibility Kaylani had a type of lymphoma. She was quickly transferred in an ambulance to the Medical University of South Carolina.

By the time she arrived at MUSC, Kaylani had a fever and her entire body was swollen. She couldn't breathe. The nurses took her vital signs and immediately sent her to the pediatric intensive care unit. Doctors ran a slew of tests and confirmed Kaylani had cancer, although they didn't know specifically what type.

On March 3, 2011, Kaylani was diagnosed with large granular lymphocytic leukemia, an aggressive and rare form of cancer. Kaylani went through more than 10 rounds of chemotherapy, underwent radiation and eventually had a bone marrow transplant.

BREAKING THE NEWS

Kaylani's family was devastated. How could they explain to a 4-year-old that she had cancer? How could they tell her she was about to undergo a series of treatments that would make her feel sick and make her lose her hair?

Kaufman said she waited a few weeks to explain it all to Kaylani. All the drugs made her very sleepy, and Kaufman wanted her to be a little more coherent when she got the news.

When the time was right, Kaufman said she told her daughter that there were cells in her body that were making her "icky" and the doctors would give her medicine to make the cells get better. She explained that the medicine might make her feel sick but it would make her better in the long run. She told her that the doctors and nurses would do everything they could to make her better.

Kaylani's reaction? "I felt sad ... but it was fine with me."

She said she knew that everything would be OK.

And when Kaylani's mother and grandmother were crying about her loss of hair, Kaufman said the spunky little girl quipped, "It's just hair. It'll grow back."

HOW MUCH IS TOO MUCH?

Dr. Matthew Koval, a child and adolescent psychiatrist at MUSC, agrees that honesty is the best policy. But he suggests parents give out age-appropriate information.

"Approach the issues as kind of like a jigsaw puzzle in the sense that based upon where the child is developmentally might be how many pieces of the puzzle you actually go over with them," Koval said.

He said it's important to tell a child the name of the illness and explain the treatment and how it will help them. Just as Kaufman did with Kaylani, he said it's a good idea to warn the child if medicine might make him or her feel sick. And he said children want to know their routine is going to stay the same, so if it's going to change, you'd better give them the head's up.

He said as the child gets older, parents can give out more pieces of the puzzle -- how the medicine works and some of the side effects. He said the child's doctor also can be involved in the discussion and should know what is age-appropriate.

"I've always had the rule of thumb that if a kid can ask a question, then they're probably ready to at least hear some sort of an answer," Koval said.

He said a 6-year-old is not going to ask what the long-term effects of a medication are so you don't have to worry about that question. But if a child asks, then he or she is probably thinking about it enough to be prepared for the answer.

"If he's asking the question you really need to give him the answer," Koval said. "If we're withholding from him then that can cause more problems that people lied or people didn't tell him what was going on."

Koval said it's also very important to tell children that they didn't do anything wrong to cause the illness.

"Particularly very young children ... in part of their moral development they think that punishment is sort of inevitable -- like if you do something wrong, God or somebody punishes you," Koval said. "You always want to reassure a child this isn't anything they've done wrong."

And as difficult as it may be, Koval said if the child asks if he is going to die, it's important to be honest with him.

"If it is something like cancer and there is some possibility for death, then I think you can say, 'Well, some people have died of this illness, but we're going to work real hard with the doctors and make sure you're getting the best treatment so you'll get better,' " he said.

He said in general, children don't understand the finality of death until they're about 7 or 8 years old. Some might understand if they've had a death in the family so you can tell that child more than a child who has not experienced a death.

At the same time, he said, a greater understanding might mean greater anxiety. It really depends on the child's developmental level and experiences.

"No parent has the exact words to say," he said. "You have to deal what you have and do the best you can."

Kaufman said Kaylani eventually asked if she would die from the disease, and Kaufman was honest about that as well. She told her the doctors would do everything they could to make sure that wouldn't happen.

"It's scarier for them to not know than to be aware," she said. "Making her a part of her recovery has helped her cope with it."

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