Dear parents, please try to understand...

In a survey of adolescent cancer patients and their families at four tertiary care U.S. pediatric hospitals, researchers found that parents had a poor understanding of their teens’ preferences for the best time to bring up end-of-life decisions, dying a natural death, and being taken off life support.

The findings of the study published in the journal JAMA Network, suggest that family-centred pediatric advance care planning interventions are needed to close this gap.

Families wanted to know their child’s treatment preferences, but did not know how to “break the ice.” As one parent reported, “I’m glad we said yes to being in the study. Some things we ‘know,’ but we don’t really know for certain and aren’t quite sure how to bring them up, so having someone to do that has been really nice.” Having those conversations ahead of time may minimize the misunderstandings that can take place when an adolescent is close to death – misunderstandings that can lead to ineffective communication, increased hospitalization, poor quality of life, and legal actions.

“Advance care planning interventions are needed to improve families’ awareness and understanding of their teens’ end-of-life choices,” says Maureen E. Lyon, Ph.D., Children’s National Hospital clinical psychologist and principal investigator on the study.

“Teens need to have a voice in their care and families are eager to know what their teens want, but those conversations can be difficult,” says Dr Lyon.

The survey showed that family members’ understanding of their adolescents’ beliefs about the best time to bring up end-of-life decisions was poor. Among the teens, 86% wanted early timing (before getting sick, while healthy, when first sick from a life-threatening illness, when first diagnosed, or all of these), but only 39% of families knew that.

Families’ understanding of what was important to their adolescents when dealing with their own dying was excellent when it came to wanting honest answers from their physician and understanding treatment choices. But their understanding was poor when it came to dying a natural death and being off life-support machines.