The day his ICP [intracranial pressure] skyrocketed, we were standing by his bedside, and Alex said that Ronnie had died, that the bleed inside his head and the pressure had completely destroyed his brain. In the bed right next to him, separated only by a flimsy curtain, was a fourteen-year-old girl who had been diagnosed with a horrible brain tumor and who was going to die of that tumor within the next year or so. She had just undergone some surgery and she was a little off the wall and her mother, who had been sitting here, suddenly said, “I can’t take this, this is too much for me!” and left the room. It was just a little too close to home for her.
Finally Ronnie did die. He died a couple of hours before I came in one morning. I had been post-call the day before and he’d been doing very badly; I left knowing it was only a matter of time. I didn’t go to his funeral, but I wish I had. I think I’ve been mourning his death ever since he died; not often or always, but whenever I think about him, I get very sad. But it’s strange: I never did know him as a person; I only knew him through the eyes of the people who loved him. Still, I know I’ll remember him and be sad for him through maybe the rest of my professional career.
I had another patient, Kara Smith, a little four-month-old who broke my heart. Her first three months of life were normal, and then she came down with pneumococcal meningitis [meningitis caused by the bacteria Streptococcus pneumoniae; this type of meningitis causes particularly devastating effects]. When I picked her up at the beginning of the month, she was just this little seizing baby who was in renal failure, on peritoneal dialysis [a procedure performed on patients in renal failure; dialysis rids the body of the waste products of metabolism that normally are removed by the kidneys], getting multiple antibiotics, and who had a very abnormal neurologic exam. To make a long story short, Kara was the patient who should have died but didn’t. Her mother agreed to a DNR order. I actually first brought up the idea of DNR with Ms. Smith. I told her it was something she should consider, and she decided that it would be best if Kara just died. It sounds cold-blooded saying it like that, but it really would have been the best thing that could have happened. We decided we’d just do supportive care and nothing heroic, but even that division became increasingly unclear.
One afternoon she had an acute respiratory attack; it was probably just mechanical, just her [endotracheal] tube slipping down her right mainstem [bronchus, the breathing tube going to the right lung], and she began deteriorating. She became cyanotic [blue], and her heart rate dropped. We readjusted her tube and she recovered a little but she still looked shitty. I felt really uncomfortable doing nothing, and yet, to bag her back was kind of a resuscitation. It was very unclear. And there was a senior, Eric Keyes, sitting there, and he said, “Forget it, just leave it, don’t do anything.” It was so easy for him to say that, it was nothing for him, he was just looking at her and thinking, This kid’s just a GORK, forget her. But I felt bad doing nothing. She was my patient. I’d made a pact, in a sense, to support her. So when she continued to deteriorate, I in fact did bag her a little. And then, after a while, she was fine again. I’m still haunted by that issue. It’s one of those very gray areas of medicine.
I talked to Karen so many times about this baby. One night after a really long discussion, she said, “Listen, you have no medical basis for what you’re doing with this kid. Why don’t you just put down the side rails on the bed and let the baby fall to the ground and die? Is that any different from letting her electrolytes get out of whack because you’re not doing blood tests on her? Why not just put down the rails?” In fact, putting down the rails wouldn’t make a difference; the baby never moved anyway. But she was right; there was no medical basis for so many of the decisions that were made. Everything seemed so arbitrary and based on emotions rather than facts. I think we were very much guided by the fact that the mother just didn’t want that baby anymore, she didn’t want a baby who was so severely damaged. We consulted the mother at many points along the road, we involved this poor woman who had no support system and who had other kids at home to worry about, and these decisions were difficult for her to make. One day I asked her to come in because we needed to talk about something; she showed up late at night, hours after the time I had asked her to come. She came with this young guy, about seventeen, who looked scared and a little intoxicated, and it turned out to be the baby’s father. I had never seen him before; he had been nowhere near the hospital for at least two and a half weeks. We sat in the family room for a long time and talked; we talked about DNR and the new thing we were going to withdraw and she said, “Go ahead.” It was as if she were saying, “Please don’t let this baby live!”