Presenting Medical Options to Parents of Terminally Ill Children


Care for Terminally Ill ChildrenThe hour was late and the hospital room was small. The parents of the six-month old girl with the congenital heart defect seemed tired and sad. The doctor, then a third-year pediatric resident, presented a difficult choice. Escalate care in order to prolong the child’s life, or emphasize the little girl’s comfort instead. “I have seen loving parents move down both of these different paths,” said Chris Fuedtner, MD, now a doctor with The Children’s Hospital of Philadelphia. “I will support you either way.”

As Fuedtner explains in “Love at the End of the Beginning of Life”, a recent article for JAMA, medical school didn’t teach him how to have these conversations. As a pediatric resident, however, Fuedtner had watched more experienced physicians speak with parents during medical emergencies. Typically, these senior doctors discussed only medical facts. They offered a diagnosis and a prognosis, and outlined the advantages and disadvantages of different treatments. Love and comfort were never part of the conversation.

Giving Parents Options

Yet Fuedtner offered the parents of this six-month old child a fuller choice. He explained that escalating care with an oscillator ventilator might help long enough for the baby to recover; however, increased oxygen levels alone would not heal the little girl’s heart. Leaving the baby on the current ventilator would not raise the child’s oxygen saturation levels at all, but the parents could still hold their baby for as long as they liked in a chair next to the crib.

The parents considered their choices and opted against the more intensive medical treatment. “We want to hold her,” they explained. Years later, Chris Fuedtner remembers these parents’ courage, as well as their love. Today, the advice he offers is challenging yet simple. Doctors who counsel the parents of dying children must be “straightforward, clear, balanced, and compassionate,” he says. “Being fully present in the midst of such strong emotions and stress is a challenge worthy of a lifetime’s determined effort.”

Image Credit: © Beth Wallonie/IngImage

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