A couple of weeks ago, I was the attending nephrologist for our hospital consultation service when I met Mr. Jones. He had suffered a severe heart attack. His heart was stunned into stillness and couldn’t effectively pump oxygen-filled blood to his kidneys or any of his other parts for the however many minutes it took for the ambulance to get to him and start resuscitation. Once he was transferred to the hospital, the cardiologists successfully reopened the major coronary artery responsible for the attack, but his kidneys weren’t working as well as they had been before. But his kidneys were the least of his troubles. My interaction with his family reminded me of an experience in my own life from about twenty years prior.
My mother and I were 3,000 miles apart when she fell ill. I was a medicine resident in Oakland, California and she was in a community hospital in Fayetteville, North Carolina. She had been increasingly ill for weeks with belly pain and diarrhea. When it got to be too much to bear, she went to the hospital. As the only doctor in the family, it was my job to find out what was really going on and translate the medical speak into regular English. I called the hospital, introduced myself as “doctor” and within minutes had her doctor on the phone.
A colonoscopy revealed near complete obstruction by what appeared to be a mass. A mass like colon cancer. She would be taken urgently to surgery.
I sounded the alarm. Brother and sisters! Get to Mama’s bedside! This was serious.
But once the surgeon got into her belly, he realized it wasn’t a mass at all. Rather, a section of her colon had somehow twisted on itself, tighter and tighter, probably over years, until it strangled itself and died. The dead section was cut out. Healthy edges of bowel were sewn together. Her belly was closed. We all breathed a sigh of relief and in true Grubbs-style Monday morning quarterbacking, my brother berated me for getting everybody so riled up unnecessarily.
Mama wasn’t awake yet when her nurse said we could go see her, but just two at a time. The youngest of her surviving children, a sister and I, went in first. I leaned over and stroked her hair.
“Hey Mama,” I said close to her ear. “We’re here. Everything went well. You’re gonna be alright.” And her lids flittered.
“See, she can hear us,” I said, looking back at my sister.
But when Mama woke up some time later she said, no, she didn’t hear us. She was completely unaware of her surroundings.
I had just attributed meaning to the involuntary jerks of her eyelid muscles. I was wrong.
In my mother’s case, her brain was completely unaware because of the effects of anesthesia. Unlike patients like Mr. Jones, bits of her brain hadn’t been dying with every passing minute after the first five without enough oxygen. Yet families whose loved ones’ brains have spent many minutes without enough oxygen, do the exact same thing I did. They attribute every lid flicker and every finger, toe, hand, foot twitch to awareness, to purposeful movement.
That’s what Mr. Jones’ family did. After five days and he still wasn’t waking up, his family said when they asked him to blink once for yes and two for no, he did, though he didn’t actually open his eyes. One blink. Yes, he could hear them. Two blinks. No, he wasn’t in pain. And to convince us doctors they weren’t just making things up they asked for three blinks. And in hardly no time at all…wait for it…there it was—the confirmatory third blink. Or so they said.
Meanwhile the neurologists had done an MRI and EEG that found things that in their years upon years of experience caring for patients whose brains had similarly been deprived oxygen for minutes upon minutes, unfortunately, sadly, did not ever wake up to a point where they could actually open their eyes and look at things, much less ever, ever get remotely back to the person they were before the anoxic brain injury happened. What Mr. Jones’ family was seeing was just a flitter—or myoclonic jerks in medical lingo.
Yet, still, the neurologists recommended that if the family wanted, it was time to have a tracheostomy done to and a feeding tube placed in the body that used to be the father, husband, brother, cousin, friend they longed for. Next, he could be transferred to a long-term facility full of similar others where their families waited for movements over the years that they, too, would say meant their parent, spouse, sibling, cousin, friend might soon return. I wish instead that the neurologists recommended letting him go because there would be no meaningful recovery. But at least his kidneys were working well enough so that no one was suggesting we start dialysis too.