Medical decision making for critically ill patients is complicated and difficult for everyone involved. It is our responsibility to ensure that patients and families are adequately informed to make choices that align with their values.
“Doc, can’t you put him down?!”
These words have continued to haunt me. I heard them when I was a young pediatric intensive care and pediatric anesthesia attending some 30 years ago. Only a few hours earlier our team had admitted a young boy who had fallen into an ice-covered irrigation pond on his family’s dairy farm in Pennsylvania. He was pulled lifeless to the shore and resuscitated by desperate farmhands and paramedics and subsequently transported to our hospital.
These shocking words were spoken with sadness by the boy’s grandfather, a burly, muscular man of the fields, who had spent his life laboring on his farm. The boy was on life support, motionless, unresponsive, intubated on a ventilator, with multiple IVs in place, surrounded by medication pumps and beeping monitors. “We wouldn’t do this to our dogs,” he said.
I explained that his grandson had only recently been resuscitated and that the water was cold, perhaps helping to preserve some brain function. We wanted to continue our supportive care and monitor his progress closely for 48-72 hours to see how much neurological function he might regain. The grandfather clearly believed that we were pursuing unachievable goals and that we should “let him go.”
The boy’s parents felt quite differently and wished for the medical team to continue supporting their son, even when, after many days of intensive care, he remained neurologically devastated. A gastrostomy tube and tracheostomy were placed. He eventually showed some slight improvement and went to a rehabilitation facility and then home.
We lost track of our farm boy but the grandfather’s words haunted me and I often wondered how the child was progressing. Had he recovered much function? Was he ever able to speak and to recognize and hug his parents and his grandfather?
A year later, I was scheduled as the anesthesiologist in the orthopedic operating room. I recognized a name on the OR schedule. The following day I was to anesthetize my old patient for surgery to release limb contractures. I had a restless night. How would I find my patient? Would he be responsive? Could he feed himself ? Would he smile or talk to me?
I entered the preoperative area with trepidation. I saw him and his family from the doorway. He was lying quietly in bed. His mother hugged me and his father shook my hand with a strong grasp. But my farm boy patient was in a world of his own. He did not talk or look at me and was curled up with contractures. His grandfather’s words came back to me.
Had we saved this boy for a good life?
Medical decision making for critically ill children is complicated and difficult for both family and physicians. Choices made are deeply dependent on the differing values of the parents and close family members.
This piece expresses the views solely of the author. It does not necessarily represent the views of any organization, including Johns Hopkins Medicine.