Too young to decide

Medical ethics, as it relates to the end of life, takes on a different meaning when it comes to pediatric patients.

Legally, children don’t have the autonomy to make decisions about their care until they reach the age of 18. As is usually the case where ethics are concerned, there is a grey area. Once a child understands what death means and has an adult perception of death, which usually happens around 8 or 9 years of age, health care providers begin to listen to them as they express their concerns about continuing treatment.

“We want a child who is going through treatment after treatment to have a say about his needs,” said Mary Jo Gilmer, Ph.D., M.B.A. “We involve parents in that discussion. We talk to parents about the most loving thing they can do for their child. Is it prolonging his life even though it is a difficult and tortuous life, or is it providing one special thing the child wants to do before he dies?

“In talking with parents and other family members, hopefully, we can help the family come to a consensus about what is the most loving thing to do.”

Gilmer was a co-leader in development of the Pediatric Advanced Comfort Team (PACT) at the Monroe Carell Jr. Children’s Hospital at Vanderbilt and a professor at Vanderbilt School of Nursing. She is currently director of the Clinical Management Program.

She helps guide families as they decide whether to continue with treatment when a child’s prognosis is poor. It is a difficult process, at best.

Kimberly and Dave Barboza faced a lot of stress when deciding on their infant son Joshua’s treatment options. Joshua was diagnosed in utero with hypoplastic left heart syndrome, a condition that is not compatible with life without three complex, invasive heart surgeries. Each surgery carries a 50/50 chance of survival.

“We wanted advice from nurses, the palliative care team and family members, but in the end, it was our decision whether to pursue treatment or not for our son,” Kimberly said.

They opted for treatment. Joshua passed away in the Neonatal Intensive Care Unit at the age of 3 months, following his first heart surgery, but Kimberly and Dave are satisfied with the decision they made and appreciate the support they received from Gilmer and PACT.

“When health care can fix something, everyone is happy. But there are a number of things we just can’t fix, and then we feel like failures as health care providers,” Gilmer said. “In a great children’s hospital like Vanderbilt’s, there still are times when we can’t fix something. That’s when we need to walk with families down that path on their difficult journey.”
- KATHY WHITNEY