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
JUN 01, 2020
Cancer
Spit in the vial to test your cancer risk
JUN 01, 2020
Spit in the vial to test your cancer risk
A Stand Up To Cancer program is trying to improve access to genetic testing for those who might be at risk of hereditary ...
JUN 27, 2020
Cancer
How radiomics can help detect lung cancer
JUN 27, 2020
How radiomics can help detect lung cancer
A new study published in the journal Nature Scientific Reports offers an alternative form of lung cancer screening using ...
JUL 08, 2020
Drug Discovery & Development
Common Blood Pressure Drugs May Prevent Colon Cancer
JUL 08, 2020
Common Blood Pressure Drugs May Prevent Colon Cancer
Colon cancer is the third most common cancer and the second leading cause of death by cancer around the world. Now, rese ...
JUL 18, 2020
Cancer
Clinical trials go forth for osteosarcoma in dogs and glioblastoma multiforme in humans using the same precision medicine
JUL 18, 2020
Clinical trials go forth for osteosarcoma in dogs and glioblastoma multiforme in humans using the same precision medicine
A development in precision medicine in cancer treatment for dogs has led to a similar advancement in cancer treatment fo ...
JUL 27, 2020
Genetics & Genomics
Pediatric Cancer Mutations Show the Importance of Non-Coding Regions
JUL 27, 2020
Pediatric Cancer Mutations Show the Importance of Non-Coding Regions
A new computational tool was created by scientists at CHOP and it has now revealed new mutations that are linked to five ...
AUG 05, 2020
Immunology
Intercepting Cancer Cells Before They Can Dodge the Immune System
AUG 05, 2020
Intercepting Cancer Cells Before They Can Dodge the Immune System
The battle that naturally occurs between the body’s immune system and cancerous cells is one that scientists have ...
Loading Comments...