MAY 21, 2020 6:49 AM PDT

When is the best time to talk about end-of-life decisions with your teen who has cancer?

A study published recently in JAMA Network highlights the need for improved pediatric advanced care for adolescents with terminal cancer. The research reveals a gap in understanding between parents and children when initiating and discussing critical conversations about end-of-life decisions. 

"Advance care planning interventions are needed to improve families' awareness and understanding of their teens' end-of-life choices," says principal investigator Maureen E. Lyon, Ph.D., a Children's National Hospital clinical psychologist.

"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. “Advance care planning interventions for parents and adolescents create a space where they can ask questions and be honest with each other." 

While families with adolescents with cancer are often spinning with the daily struggle of life, the authors say that clinicians presume that families understand adolescents’ treatment preferences for end-of-life care - and this can cause miscommunications. As has been seen not only in the pediatric setting, a lack of advance care planning is associated with increased hospitalization, poor quality of life, and legal actions. 

Photo: Pixabay

The study involved a survey of 80 adolescent-family dyads (160 participants) from four tertiary care U.S. pediatric hospitals. From July 16, 2016, to April 30, 2019, the families were exposed to Family-Centered Pediatric Advance Care Planning for Teens With Cancer intervention sessions. 

The results showed that family members’ understanding of their adolescent’s beliefs about the best time talk about end-of-life decisions was poor, with 86% of adolescents desiring an early conversation on the topic (before getting sick, while healthy, when first diagnosed, when first sick from a life-threatening illness, or all of the above), but with only 39% of families understanding this. This was particularly when it came to the topics of dying a natural death and being off life-support machines. Nevertheless, families' did seem to have an excellent understanding of what was important to their adolescents in regards to wanting honest answers from their physician and understanding treatment choices. 

The findings from the study can be found here in the article "Congruence Gaps Between Adolescents With Cancer and Their Families Regarding Values, Goals, and Beliefs About End-of-Life Care."

Sources: JAMA Network, Eureka Alert 

About the Author
  • Kathryn is a curious world-traveller interested in the intersection between nature, culture, history, and people. She has worked for environmental education non-profits and is a Spanish/English interpreter.
You May Also Like
AUG 13, 2021
Drug Discovery & Development
Breast Cancer Drug Reverses Deadly Blood Cancer in Mice
AUG 13, 2021
Breast Cancer Drug Reverses Deadly Blood Cancer in Mice
A drug currently used to treat advanced breast cancers may treat a rare type of leukemia known as myelofibrosis. The stu ...
SEP 13, 2021
Cancer
Fat Loss can Predict Gastric Cancer Survival
SEP 13, 2021
Fat Loss can Predict Gastric Cancer Survival
Cancer cachexia is a metabolic disorder in cancer patients experiencing uncontrolled weight loss.  While cancer cac ...
OCT 28, 2021
Cancer
NF-κB: a Trick or a Treat for Cancer?
OCT 28, 2021
NF-κB: a Trick or a Treat for Cancer?
A family of proteins, known as transcription factors, regulate the biological process of converting DNA into RNA. T ...
OCT 24, 2021
Microbiology
New Treatment Approach Uses Bacteria to Deliver Drugs to Cancer Cells
OCT 24, 2021
New Treatment Approach Uses Bacteria to Deliver Drugs to Cancer Cells
Bacteria can be found almost everywhere, and they can serve many beneficial purposes. Scientists are now using bacterial ...
NOV 08, 2021
Drug Discovery & Development
A case study of CBD's tumor shrinking potential
NOV 08, 2021
A case study of CBD's tumor shrinking potential
A recent article published in the British Medical Journal reported the case of a woman who shrank a tumor by taking CBD. ...
NOV 11, 2021
Cancer
US Military Veterans: Cancer Risk and Cancer Research
NOV 11, 2021
US Military Veterans: Cancer Risk and Cancer Research
The US Department of Veteran’s Affairs (VA) estimates about 50,000 new cancer cases diagnosed each year. In total, ...
Loading Comments...