At the End of a Child's Life, Parents at a Loss for Words

PHOTO: Emily Lewis was 12 years old when her parents had to tell her she would die after a three-year battle with cancer.Debbie Lewis
Emily Lewis was 12 years old when her parents had to tell her she would die after a three-year battle with cancer.

Debbie Lewis will never forget the day she had to tell her daughter, Emily, that the 12-year-old was going to die.

Emily had been diagnosed at age 9 with Wilms tumor, a pediatric kidney cancer. The disease spread to her lungs before long, and she spent three years in and out of treatment, bouncing between progress and relapses.

Emily's doctors eventually told Lewis there was nothing more they could do. She and husband John had to tell Emily that the cancer had spread too far.

"Emily looked at me, and said, 'Mom, am I going to die?'" Lewis said.

As hard as the question was, Lewis said she never doubted that she should tell her daughter the truth. "She deserved to know as much as we knew, based on her ability to understand it," she said.

Two months later, in August 2009, Emily died in hospice care.

Things went differently for Dominic Stacey, 8, of North Devon, England, who has Duchenne muscular dystrophy, a genetic disorder that causes progressive muscle weakness. Although people with the disease typically survive only until their mid-20s, Dominic's parents had been evasive about the disease's outcome.

Dominic Googled his condition, learned the truth about his prognosis and confronted his father, according to a report on Friday in the Daily Mail.

"He came up and asked me why I had lied to him," Stacey told the Daily Mail. "We sat him down and explained everything. It was one of the hardest conversations I've ever had."

Few parents can imagine having to tell their child that his or her life will be cut short. Parents faced with the task are often reluctant to speak candidly about death, fearing that the news will spark fear or sap the child's will to live.

Dr. Justin Baker, director of palliative care at St. Jude Children's Research Hospital in Memphis, Tenn., said many parents ask him not to tell their children that they will die, even when the outlook is grim.

"They'll tell me, we just haven't been able to bring up the fact that he has cancer," Baker said. "My first question for them is, 'How much do you think your child already knows?'"

Children often have some idea that their condition is serious from listening to doctors, being aware of their own bodies or even researching their disease.

"Sometimes, they're already making up details in their mind about what's happening because they don't have an explanation," said Angela Locke, a child life specialist at Rainbow Babies and Children's Hospital in Cleveland. "Sometimes it's less scary when parents give the honest truth."

A conversation about death happens differently, depending on the age of the child and the cultural background and customs of the family. But experts say it's important for all parents to be as honest as they can about their child's condition and what the future holds.

Even using words such as "death" or "die," rather than euphemisms such as "going to sleep" or "passing away" is important for honest dialogue.

"We want to avoid confusion as much as possible," said Suzanna Paisley, a child life specialist at Children's Hospital Colorado in Aurora. "Children want to know the truth. Using different language doesn't soften the reality of it."

Before starting a conversation about death, experts encourage parents to gauge what their child already knows about their condition and open the door for the child's questions.

"It's OK for a parent not to feel like they need to have all the answers," said Maura Savage, a social worker at Children's Healthcare of Atlanta. "But there are a few things they can reassure their children: 'You won't be alone, to the best of our ability, it's not going to hurt, and we're going to be OK.'"

Research suggests that those conversations are beneficial not only for children, but for parents as well. In 2004, Swedish researchers interviewed the families of more than 300 children who had died after a terminal illness, asking them if they had talked with their child about their death. Nearly 35 percent of parents reported that they had talked about death with their child, and none of them reported regretting those conversations.

Of the parents who reported not talking to their child about their death, 27 percent regretted that decision.

To help parents begin a dialogue with their child, many hospitals have teams of doctors, social workers and other specialists who coach parents on how to talk and listen to their children about death. Once the conversation begins, the teams can help families make plans for the child's future and involve the child in decisions about their own treatment and death.

"Children do better the more involved they are in these conversations," Baker said.

Lewis said involving Emily in discussions about her cancer helped her to move beyond her condition and enjoy her life until the end. During her three-year battle with cancer, Emily kept going to school, earned an orange belt in tae kwon do and sang in her school's choir.

"I was so proud during the Christmas concert at her school. She was bald and had a feeding tube in, but she was up on stage singing with everyone else," Lewis said. "She felt empowered knowing what was going on in all aspects of her life."