"I want you to do everything....."
It's something you hear quite often in the NICU in regard to babies who have little or no chance of long-term survival. In my nearly 30 years as a NICU nurse, I can remember many such babies - and the famlies who loved them. They must make decisions that none of us would want to make.
Baby Martin (not his real name) was a full term baby who, for reasons never known to us, had seizures beginning on day 1 of life. It's been a long time, but I don't recall any birth trauma in his history. His NICU stay was relatively unremarkable and he was eventually discharged on anticonvulsant medication only to return to the ER a few weeks later. He'd had a seizure -- one much more severe than any we'd seen in the NICU.
He was admitted to the Pediatric ICU and his seizures, became more and more difficult to control. One study after another left his doctors puzzled and his condition deteriorated. Periodically, he would have a seizure so severe that his heart would stop. Each resuscitation was successful, but eventually it became obvious that the seizures could not be controlled and that his brain had been irreparably damaged. The doctors approached his mother to ask about simply letting him go if it happened again.
"No," she said. "If it is time for him to go, God will take him regardless of your efforts."
Puzzled and frustrated, they continued their aggressive interventions - including periodically resuscitating him.
One night I was floated from the NICU to the PICU. He wasn't my patient, I knew the pediatric resident from his NICU rotations. He had developed a relationship with the mother and was the one who spent the most time speaking to her about the baby's condition and prognosis. He knew I had also gotten to know the mom when the baby was in the NICU and asked for my thoughts on the situation.
"Does she understand what you're doing when you resuscitate the baby?" I asked.
He assured me that he had explained it fully to the mom and believed that she understood. He must have thought more about it, though. He told me later that he had asked the mom to stay for what proved to be the baby's final resuscitation. He had thought she understood. So did she. When she witnessed the actual resuscitation, she decided that this was more than she should be asking of the baby - and the staff. She decided that she would rather simply hold him and let him go.
Parents make choices based on what they believe is best for their child and we try to respect those choices. They seldom truly understand what they are asking when they ask us to "do everything." They must make some of the most difficult choices of their lives based on advice from people they may not know well at all and with limited understanding of the information we try to give them.