Understanding Timing of Discussion, Preferences
The results demonstrated that the family members’ understanding of their adolescent’s beliefs about the best time to bring up end-of-life decisions was poor, with 86% of adolescents preferring earlier discussions. The adolescents wanted these conversations to occur before they got very sick or soon after diagnosis.
The families’ understanding of what was important to their adolescents was excellent when it came to wanting honest answers from their physician and understanding treatment choices. However, there was a big difference between the families’ understanding and what the adolescents wanted when it came to dying a natural death and being off machines that extend life.
“The surprising finding was that the adolescents were far more interested in having the conversations early on, which was not what the parents thought,” said Dr Grossoehme. “Parents thought the adolescents would want more aggressive care.”
Bridging the Communication Gap
Nurses are in a prime position to help facilitate discussions regarding adolescent patients’ EOL care. Parents don’t know how to start these conversations. Nurses, who often spend significant time in patients’ rooms and develop relationships with them, can facilitate the conversations that need to take place, Dr Grossoehme explained. Nurses can also ensure that these conversations don’t happen at an inopportune moment.
Parents of children with a life-threatening health condition must go through their own grief process, and denial is the first stage of that process. Having a child die before they do can be parents’ worst nightmare, striking at their core identity as a parent. “Kids are a lot more intuitive than parents sometimes give them credit for. They know when something’s wrong, even when no one is talking about it,” explained Kenneth Haller, MD, professor of pediatrics at Saint Louis University School of Medicine in St Louis, Missouri (email communication, July 2020).
In fact, not talking about the bad stuff can make kids feel as if either they did something wrong or they need to go through this bad thing on their own. “Obviously, these are both terribly harmful to kids,” he added.
“The study really resonated with me,” explained Amanda Brown, MD, a hospice and palliative care physician at University of Pittsburgh Medical Center (UPMC) Children’s Hospital in Pittsburgh, Pennsylvania (email communication, July 2020). The findings are consistent with what she sees at her institution. “It fits with what we see and the patients we take care of. Kids try to be tough for their parents, so often they won’t volunteer that they want to discuss end-of-life care,” she explained. “We need more studies like this.”
These findings need to be confirmed, and much more research is warranted. To move the field forward, clinicians need to know when to begin raising the issue of EOL care with adolescents, commented Justin Yu, MD, a hospice and palliative care physician at UPMC Children’s Hospital. “[As] with any other patient population, communication strategies need to be refined,” he noted.
Healthcare professionals need to be fully present to the physical, psychological, and spiritual needs of the parents and siblings, as well as the adolescent patient. “We need to let parents know that we are there to help them through their very appropriate anger, sadness, fear, guilt, and shame. We can help facilitate these difficult conversations so parents can truly listen to their child’s thoughts and wishes,” said Dr Haller.
Friebert S, Grossoehme DH, Baker JN, et al. Congruence gaps between adolescents with cancer and their families regarding values, goals, and beliefs about end-of-life care. JAMA Netw Open. 2020;3(5):e205424.