102 was the first patient I cried over at the hospital, which is strange when I think about all the things I probably should have cried over and didn't. I have worked with him dozens of times. Yesterday, he looked at me for the first time. Not through me, not glazedly forwards, but at me. I checked his eyes- they reacted to light, briskly, round 6mm pupils that shrunk equally under my penlight. I was taken aback. I spoke his name. He raised his eyebrow. The facial expression made no sense, but it was there, movement. It felt, I imagine, like seeing the first smile of a baby.
I worked with 102 again today. He looked at me, those clear green eyes that last week had been looking at things unseen to us. He looked like he knew what he was looking at, and he moved his face with expression, the face that has been droopily absent of movement beyond a grimace for months. His family told me that they were changing his code status to Do Not Resuscitate, and moving him onto hospice care. I wanted to grab a hold of them, to make them look into his seeing eyes, to watch him slowly squeeze a hand, but I couldn't do more than suggest and support. The Wife had sat with him for 3 hours that afternoon, just quietly holding his hand on her day off work. She told me that she didn't know if she was doing the right thing, but she had decided, because it seemed like the only thing to do, what he would have wanted. She said they'd been there for months, and seen almost no progress, and had taken the suggestion of the neurologist to move to comfort care only. Insurance coverage for their stay runs out in 3 days, and they do not have money. They do not have anymore energy for hope.
The mother of 102 is less sure. She thinks her son might be responding, and she gently suggests tests, more tests. She can't believe a perfect body can be vacant of life while it breathes on without aide. Maybe they were doing the wrong thing, maybe...
Maybe, I had seen that neurology exam. I watched her come into the room, wave her hand in front of his face and tell him to close his eyes, wait 3 seconds and then leave. She had not watched his pupils, held his hand, taken into account his napping. I had stopped her in the hall to beg for a further assessment, but I was brushed off. There was no change, she said. She had seen it in her exam. And now, he was leaving, stopping therapy, to fade. I suggested a second opinion is always within their power when they feel unsure, but I can say no more. They are the decision makers, the family. They know 102 in ways I do not understand. There is nothing I can do about it.
The spunky little blond daughter doesn't know yet that we're letting her father die. She is making plans for when he gets better. They won't tell her the truth until she finished the school semester and participates in her soccer competition. In the meanwhile, she introduces me to her dad's distant friends on skype, and tells me about what she and her dad are going to do over the summer. I am to remain silent about reality.
That is my job, to be quiet, caring, confidential.
But they can't keep me from crying in the medication room.
102 is only in his 30s, so young young young. And he is alive inside, I see it peeking through, like a branch in winter waiting to burst once more into the foliage of spring. If only they could wait. But the world does not fall asleep until my patients are ready to ride off into the sunset. Healthcare plans and insurance are not Prince Charming. They wait for no one: not dead branches, not unsure mothers, and definitely not nurses wiping away angry tears as they dispense Tylenol into med cups.
Sometimes the hardest thing is to quit