Fortunately I was home that Friday afternoon, when we got the phone call from the extended-care hospital. We were told gently and efficiently: If we wanted to say a final goodbye to Valerie, we should visit her right away, because she was going to die that night.
My wife, of course, was immediately suspicious: “How do they know she’s dying tonight?” Good question.
Valerie had been in the hospital for five years with a strange neurological disease, a collection of symptoms called Somebody’s Syndrome (as if they knew what was happening). The usual course of Somebody’s Syndrome should have carried her off in the first year, but she motored on cheerfully for four more years, before slowly losing her reason and speech. Her decline was obvious but undramatic. How did they know she was dying that Friday night?
The hospital room was windowless, bronze-dark and lit by monitors and floor-level nightlights. Valerie’s skin was paper-thin, barely covering her fingers, elbows, skull and once lovely cheekbones. You could see that she’d been a truly beautiful woman, but now she was wasted and confused. She was scared, panicking, though her body was too weak to do much about it. Her eyes darted about, and her breath came in little spasms.
“She’s very weak,” the nurse said.
“Why do you think she’s dying tonight?” my wife asked.
“She’s very weak,” the nurse repeated. “I’m supposed to give her an injection. For pain.”
A doctor-friend says an experienced physician can usually tell if a patient is dying within 36 or 72 hours, and it’s part of good medicine to prepare the family. More: adequate pain control may – depending on the patient’s choice – range from conscious discomfort to peaceful unconsciousness. But pain control, in itself, need never be fatal, and certainly not on schedule.
Anyway, after the nurse left, we dragged two chairs through the tubes and wires, and sat down on each side, holding Valerie’s hands. Her eyes went back and forth between us. Her monitor showed her blood oxygen was low – I don’t remember the number – and that wasn’t surprising, given her shallow, spasmodic breaths. “We’re not leaving,” my wife said.
For the rest of the evening, we stroked Valerie’s arms, sang old show tunes, recited childhood prayers, and read familiar Bible passages. She started breathing more deeply. Visiting hours ended at 9:00 pm, but no one kicked us out. And gradually, as Valerie calmed, as her breathing deepened and slowed, we watched her blood-oxygen level climb… 94 percent? 95 percent? We never knew if she recognized us, but now secure, she gave us a peaceful gaze, maybe even smiling. The miracle of touch – so much more than a Yellow Daycare Rope.
As the evening lengthened, however, the shift nurse started peeking into the dark room, wondering when we’d leave. Shift change at 11:00? Her relief might be angry with the job undone? Peeking in, a shadow blocking the brightly-lit doorway. It was almost comic.
Finally, around 10:30, the nurse came into the darkened room and whispered, “I have to give her the shot now.”
Not knowing how much Valerie could understand, but masked by the gurgling and wheezing of all the medical gear, my wife mouthed almost inaudibly, “Will it kill her?”
The nurse shrugged, embarrassed: “It’s the doctor’s order.”
She expected us to retreat, so she could get on with it. And if we’d launched an angry defense of Valerie’s right to a peaceful death, we’d have lost. The nurse wasn’t answerable to us nor Valerie. She was answerable to her Manager, the doctor who wrote the order.
My wife, however, was inspired. “What exactly does the order say?” she asked.
“It says, if the patient is distressed, give her this shot,” the nurse answered.
“But she’s not distressed,” my wife insisted. “Look, she’s perfectly happy.”
The nurse was flummoxed. Then, with a little twitch, she suddenly looked – really looked – at Valerie. Valerie looked back at her: calm, ethereal, breathing deeply and maybe even smiling.
“No, she’s not… not at all distressed,” the nurse muttered. Now we looked at her. Then we realized, she didn’t want to do it. She was doing what she had to, but if there was some way out, maybe she’d take it.
“I’ve already signed out the ampule and broken it,” she mused. She stroked Valerie’s arm. Minutes passed. Then, looking at the needle, she decided: “I’ll have to squirt it down the sink.” Then she left.
We stuck around to almost 3:00 am, to make sure the shift-change was okay, and we were glad we did. Valerie, always a very kind person, had been in that hospital for years, and as the night wore on, a small parade of aides and cleaners came through the room, stroking her arms and saying their goodbyes. That alone was worth it.
Late the next day, Saturday, Valerie’s daughter flew in from abroad. And twelve hours later, Valerie died, holding her hand. It seems that, earlier on that Friday, the daughter had talked to the doctor on the phone, saying she didn’t want her mom to suffer. And he apparently decided there’d be less suffering all around, if Valerie died before her daughter got there. We never told the daughter what we’d done.
What did we achieve, buying Valerie an extra 36 hours? For the shift nurse: saving her the burden of killing someone. For Valerie: who knows? She went in her own time. For her daughter: we can’t say, but she seemed happy to have said goodbye.
What did we learn? You can’t win against the Homogenous, Universal and Managerial Administration, no matter how unjust an outcome, by “demanding your rights,” by bucking the workers. Public servants – clerks, caretakers, social workers, nurses, teachers, cops – have a job to do. They get used to saying “No” to whoever loses to its laws, regulations and directives. However, that doesn’t mean they like it. They may not want the responsibility for a nasty outcome, if they can duck it, or maybe upload it back to Management.
We’ll talk more about the Universal Administration’s effect on those fundamental natural moments, birth, marriage and death. Meanwhile, the immediate lesson: the HUMA’s working imperative is CYA – Cover Your Ass. So clerks are always suspicious that their managers are trying to download responsibility for implementing vague decisions. A simple request for clarification of the relevant rules and procedures may be enough to provoke uncertainty. Uncertainty may provoke delay, and delay, rescue. We’ll talk much more about CYA.

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