Thursday, October 05, 2006

"I want you to do everything....."

"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.


DisappearingJohn said...

I know first hand that most people, despite our best efforts, do not understand what a resucitation truly involves. I think thats why so many hospitals (including mine)is making efforts to allow families to be in the room if at all possible, not only so they know that everything is being done, and to provide some closeness if it is unsuccessful, but alos so that they can say "stop" when it becomes obvious we are simply beating the shell of of an empty body...

I see how hard that is for an adult to decide on an elderly family member frequently. As a parent, I cannot imagine how hard that is on a parent of a baby...

cherigrace said...

Excellent post! I have always maintained that when the elderly are asked about advanced directives, they aren't given the "whole story" Just saying, we'll shock you or do CPR, well, that doesn't sound too bad- I mean you're not exactly aware of it!
But telling them they'll have a tube down their throat and be tied to the bed so that they can't pull it out, they won't be able to speak or eat, that this torture could continue for weeks- this tends to make the decision a little different. I think it's all in how it's presented.
A physician I respect tells the family in these it's-all-over-with-anyway situations, "Sometimes there is a line between helping someone and being cruel to them. I am afraid we are crossing that line."
I also think it's helpful to explain to the person that, for instance, the ventilator is not going to change anything regarding Mom's end-stage emphysema; it's simply going to prolong her suffering.
Desperate families sometimes see measures as "cures" when they aren't. Obviously, there are many situations in which a viable patient with a quality of life needs to be treated very aggressively. Families need to know, however, that when the kidneys and liver and brain have all shut down, a machine you can wheel in the room isn't going to fix anything.
It's also so much nicer for them to be able to be there, with the person, holding them, as they die, rather than out in the waiting room sobbing and anxiously awaiting the appearance of a nurse or doctor (clue: if they're carrying a Kleenex box with them, it isn't good news)
As nurses and health care professionals we are patient advocates- let's keep advocating whatever the caring choice may be, and support the family as they deal with these extremely difficult decisions.