Washington, DC—For teenagers with cancer, advance care planning helps families understand the wishes of these young, sometimes very ill patients and may help them navigate difficult healthcare decisions, according to a new study published online first by JAMA Pediatrics.
Cancer is the leading cause of death in teenagers, but advance care planning (ACP) has not been well studied in this group. This study—FAmily CEntered Advance Care Planning (FACE)—is the first randomized controlled trial to examine the acceptability and effects of ACP with adolescent cancer patients and their families. FACE also is the first randomized clinical trial of a structured pediatric ACP program to meet the American Academy of Pediatrics and Institute of Medicine guidelines.
The findings suggest ACP may help ease decisions and reduce conflict within families of teens with cancer during a medical crisis, such as choosing whether to decline or cease unnecessary or unwanted care.
“Our results have important research and public health implications not just for cancer patients, but possibly other teens with complex chronic medical conditions who face difficult choices,” said lead author Maureen E. Lyon, PhD, Principal Investigator, Children’s Research Institute, Children’s National Medical Center. “Teens with cancer and their families accepted and benefited from an approach that balanced planning for the worst with the hope for a cure, which is also helpful for their healthcare team.”
The study findings included the following:
- Families and teens who participated in ACP sessions were much more likely to agree with each other on future treatment options. Control families often were wrong or unsure about their teen’s preferences.
- Families and teens who participated in ACP sessions were more likely to agree to limit treatments than were control group families.
- Teens in the sessions were significantly better informed about end-of-life decisions compared to the control teens.
- If they became unable to speak for themselves, all teens in the sessions (100 percent) would want their families to do what they thought best at the time for their care; fewer control teens (62 percent) would give their families this leeway.
- African-American families were willing to participate in ACP and, in contrast to earlier studies, did not consistently choose to continue treatments in all situations.
The FACE study enrolled 30 teens and 30 family members. In the intervention group, teens and their families completed a survey to assess values, beliefs, and life experiences with illness and end-of-life care; a facilitated interview to elicit their understanding of the patient’s condition, fears, hopes and experiences; and an advance directive document, completed by the patient with a family member present. The control group received standard of care plus written information about ACP.
Lyon observes that ACP is important for teens because they have no legal right to a say in their own end-of-life care and families of chronically ill teens do not always know what their teens want for their care. ACP creates an opportunity to strengthen communication within families and uncover disagreements before a medical crisis arises. The process empowers families and teens, respecting their autonomy, while keeping the role of healthcare professionals central.
For more information, contact Paula Darte or Emily Hartman at 202-476-4500.