When It’s Time To Choose Death For A Terminally Ill Child

BOSTON — It may seem unimaginable that parents could want a child to die.

But a new study by Boston’s Dana-Farber Cancer Institute finds there is a time when some mothers and fathers would choose death over life for a child: in cases of fatal illness, especially when a child is in extreme pain. And the researchers want to help families in this heart-breaking situation.

The findings reflect how devastating it is to watch a child suffer.

In interviews with researchers, more than 10 percent of parents whose children had died of cancer said they had considered speeding up their child’s death. And more than a third said they would weigh ending their dying child’s life sooner if the child were in uncontrollable pain.

These are feelings many mothers and fathers don’t want to say out loud.

“That is something that a parent doesn’t even want to share with other parents because society doesn’t allow you to talk about something like that,” said Patricia Loder, executive director of Compassionate Friends, a national organization that supports families after the death of a child.

There’s a social taboo against verbalizing those kinds of dark thoughts, Loder said. And that taboo causes some people to think, ” ‘You’re a parent and why on earth would you want your child to die?’ even though you’re watching them in such distress and such pain and such agony,” she added.

But some parents do have these feelings when they watch a child slowly dying from a fatal illness. In fact, the researchers said these emotions are probably under-reported because many parents are unwilling to admit to something that seems so abhorrent.

Ways To Ease A Child’s Suffering

But why study this?

Dr. Joanne Wolfe, the study’s senior author, said the point of her research is to try to make sure severely sick kids don’t end up in terrible pain. She said it’s also to make sure parents know there are ways to help a suffering child other than hurrying up death — and she wants doctors and families to talk about that openly.

“If we don’t enable conversation, then I can’t imagine what it would be like to hold those worries inside as you’re facing the end of your child’s life,” said Wolfe, director of pediatric palliative care at Dana-Farber and Children’s Hospital Boston.

The medical community does not focus enough on reducing pain in terminally ill children, Wolfe said. Many doctors who work with elderly patients routinely initiate end-of-life discussions. But doctors who treat children are often focused on curing them or extending their lives, even when the situation looks hopeless.

“I see children with life-threatening illness as kind of like an orphan population where we haven’t had enough of a focus on trying to improve the quality of our care,” Wolfe said.

Desperately sick children don’t have to suffer. Doctors could put them to sleep with medication to control their pain, a process called palliative sedation.

“And that’s not a euphemism for ending the child’s life,” Wolfe said. “You can get to the point where you even would administer general anesthesia, in which case the child would be asleep, but you’re not giving enough anesthesia to cause the child to stop breathing.”

Another option, called proportionately intensive symptom management, involves gradually increasing pain medication so a child dies in comfort.

Avoiding Uncomfortable Conversations About Death

Both of these are legal alternatives to hastening a child’s death, yet doctors and parents sometimes avoid discussing them at all, Wolfe said.

“The reality is that because it’s so tragic to face the loss of a child, most people don’t actually want to read about it in a newspaper, they don’t want to talk about it,” she added. “And not to say that this should be an everyday topic.”

But when a topic like this is ignored, parents may not even know these pain management strategies exist, she said. And doctors may not mention them because that could start an uncomfortable conversation about death.

Yet that’s when mothers and fathers need honesty most, said Loder, of Compassionate Friends.

“That’s the time where the parents need somebody to talk to, somebody to reason with them, somebody to tell them exactly what’s going to happen,” she said.

Because when parents know the truth, they can make the best end-of-life decisions for their children, Loder said. And if parents know there are ways to spare their kids from pain, they may not be driven to thinking that their kids are better off dead than alive.

The study appears in the Archives of Pediatrics & Adolescent Medicine.