Emilio Gonzalez, the 19 month old whose family contested the Texas law which would permit hospitals to discontinue life support they consider futile, has died. According to news reports, Emilio died in his mother's arms. I am very sorry for her loss, but not sorry that Emilio will no longer suffer.
Emilio was thought to have Leigh's Disease, a rare neurological disorder which typically appears between 3 months and 2 years of age. Children sometimes live to their mid-teens with supportive care, but those with the most severe form seldom live more than a few years.
End of life decisions are never easy, and when they involve a child they can be excruciatingly difficult. Unfortunately, choices about whether to continue or withdraw life support are not as uncommon as one might hope -- even in the Neonatal ICU. Sometimes the infant is critically ill as a result of a congenital anomaly or syndrome. Sometimes it is a result of extreme prematurity. Always the parents are devastated and look around them for support in the terrible decision they must make.
Occasionally we resort to help from the ethics committee. They examine the facts of the case and make recommendations. I work in a Catholic hospital, so we must follow the precepts of the Catholic Church as well as the laws of our state. Catholic teaching on the discontinuation of life support is that it is not ethically different than never starting it at all. That may be true, but emotionally, the impact is quite different. Helping the parents to fully understand the choices isn't easy either.
In one case, the baby had to be resuscitated repeatedly. The mother was offered the option of a DNR order -- to simply stand by the next time the baby's heart stopped and let the mother hold her child as he died. She was ushered out of the room for each attempt. The doctor had explained to her repeatedly the steps in resuscitation and was growing increasingly frustrated with the mother's belief that when it was time for the baby to die, we would be unable to save him. Eventually he asked that the mother be permitted to stay in the room during the next resuscitation. When she witnessed the resuscitation, she decided that she did not want her baby to go through that experience again.
Other parents have not had the same response. One became terribly agitated when it appeared that we might not be able to resuscitate the baby. The doctor running the resuscitation felt physically threatened by the response. The baby was successfully resuscitated that time, but when the baby coded for the last time, we were relieved that the parents were at home.
It is incredibly draining to care for children whose parents are not ready to acknowledge that they are dying. Many of the interventions are uncomfortable and some are downright painful. It is one thing to hurt a baby with the intention of saving his life. It is another thing entirely to inflict pain in the process of delaying death for a few days or weeks. It is the most difficult part of my job - this fending off the inevitable in order to allow the parents time to accept it.