Jennifer Needle

New Study: Parents Struggle to “Break the Ice” When it Comes to Advance Care Planning with their Adolescents with Cancer

May 26, 2020

In a study co-authored by Center for Bioethics Faculty Dr. Jennifer Needle, MD, MPH, researchers found that parents of teens with cancer have a poor understanding of when their adolescents would like to discuss end-of-life care. The study aimed to “examine patient-reported end-of-life values and needs of adolescents with cancer and congruence with their families’ understanding of these needs.”

Researchers surveyed 80 families from 2016 to 2019 at the following four highly specialized pediatric hospitals across the country: Akron Children’s Hospital; St Jude Children’s Research Hospital in Memphis; University of Minnesota Masonic Children’s Hospital; and Children’s National Hospital in Washington, D.C.

Findings were published in JAMA Network Open as part of Original Investigations in Pediatrics and include the following:

  • The majority of teens (86%) wanted to discuss end-of-life care early (before getting sick, while healthy, when first sick from a life-threatening illness, when first diagnosed, or all of these)
  • The minority of families (39%) were aware of the preference for early end-of life care discussions
  • Families understood their adolescents priorities around honest answers from physicians and understanding treatment options
  • Families had a poor understanding of their teens’ preferences for dying a natural death and being taken off life-extending machines when dying
“The findings suggest that family-centered pediatric advance care planning interventions are needed to improve families’ awareness and understanding of their teens’ end-of-life choices.” - Dr. Maureen E. Lyon

Funding for this study came from the National Institute of Nursing Research and was facilitated by the NIH National Center for Advancing Translational Sciences & Children’s National

According to Principal Investigator Dr. Maureen E. Lyon of Children’s National Hospital: “The findings suggest that family-centered pediatric advance care planning interventions are needed to improve families’ awareness and understanding of their teens’ end-of-life choices.” 

In the article, the authors conclude that pediatric advance care planning is needed to “close the gap in families knowledge of adolescents’ end-of-life treatment preferences,” a measure that could minimize “ineffective communication, increased hospitalization, poor quality of life, and legal actions.”