For the young
There was no simple medical explanation for what was happening to the 12-year-old boy with severe mental retardation and congenital abnormalities. It became clear that he was becoming less and less interactive with his surroundings after several attempts at artificial nutrition, including one to surgically place a feeding tube lower in his intestine. He vomited frequently, and his stomach was distended.
The boy had a neurological disfunction in his intestine, says Marcia Levetown, MD, medical director of the pediatric hospice program at the University of Texas Medical Branch in Galveston and the Hospice of Galveston County in Texas City.
Despite signs of pain and discomfort, the boy’s mother wanted to at least try to give him food. After three months of hospitalization and gradual weaning from intravenous fluids, he died peacefully.
"There was a great deal of interaction with the parents," Levetown says. "We didn’t jump to any conclusions and allowed the mother to prove to herself that the food and even IV fluids were causing her son pain."
Other pediatric cases, although profoundly tragic, are easier to see as appropriate situations in which to withdraw artificial nutrition and hydration, she says. "Once a child is in a permanent vegetative state, and the surrogate decides that it is OK to withdraw nutrition and fluids, the parents and the physician can make a pretty clear choice."
Permanent vege-tative diagnosis can be made a year after a trauma that caused a brain injury and three months after a hypoxic injury. Permanent vegetative state differs from persistent vegetative state and coma by its neurological distinction from coma (actual cranial nerve damage) and persistent state (longer duration and defined irreversibility).
Parents and other adult caregivers often have difficulty accepting a permanent vegetative diagnosis. "This can be hardest for the parent whose child has gone from being normal one day to severely brain injured in a matter of minutes," Levetown explains.
Doctors sometimes add to parents’ distress by continuing to offer tube feeding and fluids even when the child is being harmed. "Doctors and parents tend to want to do all critical interventions when a child is involved. But psychosocial caring is part of our job, too," she says, noting that it is the physician’s ethical responsibility both to do no harm to the patient and to be honest with parents.
The best plan is to allow parents time to accept the irreversibility of their child’s condition before bringing up a decision about artificial nutrition and hydration and other life-sustaining treatment, Levetown says. This may mean negotiating a schedule of when it might be acceptable to withdraw each option, including hospitalization itself.
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