by Tilda Shalof
“Your father, Lola. Where is he?” I asked.
“In Bosnia,” she said quietly.
“Sarajevo?” I asked because I didn’t know the name of any other city.
“No, Banja Luka,” she said. “This man is the same age as my father. I would hate to see my father like this. Why are they doing this to him? Don’t they see how cruel it is?”
“I don’t know.”
All the nurses were aware of Mr. Bellissimo’s case, and it was to his room that our gaze turned with mystified curiosity and incredulity when we arrived at the beginning of each shift. We were all checking to see if he was still there.
Another week passed and Mr. Bellissimo was still hanging on, after yet another cardiac arrest and a few more complicated setbacks: infections, intestinal obstructions, and more organ failure.
Morty called in the night before a shift and requested to be his nurse the next day.
“I’ve decided what I’m going to do,” Morty told us when she came in. She was wearing her “No Whining” sweatshirt and dangling earrings in the shape of tiny inukshuks. There was a determined, devilish look in her eye that I had never seen before. I decided to keep a close watch on her.
On rounds, Dr. Huizinga put forth a pathetic case for continuing treatment.
“What I mean to say,” he said and pushed his glasses up to his head so that he could rub his eyes, “is that I am attempting to determine the extent to which, by that I mean the extent to which I, and hopefully in conjunction with Mr. Bellissimo’s daughters that is, but this may or may not be the case, and with all due respect to Dr. Dejenni,” he gave a deferential glance to a visiting colleague, “who’s come here at my request to offer a second opinion – notwithstanding the hospital’s exorbitant parking fees …”
“He’s floundering,” I said, embarrassed for him.
“What a ditherer!” exclaimed Nicole in astonishment.
“He’s a coward.” Laura was disgusted.
Yet we were all so fond of him. We knew he was kind and caring, and a brilliant and daring doctor.
“He’s an idiot,” Morty blurted out.
Daniel overheard her and looked crushed.
“Go apologize to him, right now,” I told her. “You’ve hurt his feelings.”
“No way.” She folded her arms across her chest.
“Justine, I have a sense you’re in disagreement with the treatment plan,” Dr. Huizinga said.
“Don’t you disagree, too? Be honest, Danny! You can’t even defend what we’re doing. You can’t even come up with a convincing case for it.”
“No. I have to admit …” He hung his head. “We are bound by the family’s wishes. Say, are they perhaps motivated by religious beliefs?” he speculated. “Are they Catholic?”
“If these people are in any way religious,” said Morty, glaring at him, “their father is in purgatory.”
Later, Morty read out loud to all of us gathered at the nursing station the note that Dr. Huizinga had scribbled in the patient’s chart:
“‘The severity of the situation was explained, along with the possible limitations of escalating treatment. My view is that his survival is not guaranteed and the most likely outcome is non-survival.’”
“Non-survival! Isn’t that the richest euphemism you’ve ever heard?” Morty said. “What bullshit! This is the crap he writes on a patient who is practically dead?”
No one rose to her bait. We’d heard it all before, so many times, and we needed a break from talking about it, thinking about it, and most of all, from doing it day and night. The hundreds of versions of this same conversation had finally left us exhausted.
As soon as the daughters walked in the door later that morning, Morty was ready for them.
“Maria. Theresa. Today I’m going to answer all your questions. I will tell you everything you want to know. Would you like to see what we’re doing to your father? Good. Here goes.” She grabbed the curtain, pulled it around the bed, and flung off the blankets that had been covering their father. Morty stripped back his gown and showed them his bloated body, the mottled limbs, the necrotic fingers and toes, wrinkled and black as prunes.
“Dead tissue,” she said.
The sickening smell of his exposed, rotting body quickly filled the room.
“These fingers and toes will fall off, any day now,” she said evenly. “These too,” she said as she showed them his testicles, the size of two bulging cantaloupes. She pointed out how they were leaking rivulets of clear yellow fluid all over the soaked, folded towels upon which they had been propped. She allowed them to register these sights for a few minutes.
I kept my eyes on the daughters’ horrified faces and took a mental note of where the chairs were in case I had to catch them if they fainted.
“I’m now going to suction the secretions out of his lungs,” said Morty, evenly.
They watched him strain and cough and choke as she pushed the plastic catheter into his lungs and then as it sucked out strings and clumps of green sputum. Morty suctioned his black mouth, which was full of sores and blood clots.
As she prepared to clean around his tracheostomy with swabs dipped in hydrogen peroxide, something caught Morty’s eye. She looked down, leaned closer, and what she saw there made her reel back in horror. With a pair of tweezers she picked out two long white wriggling things.
“Maggots!” She gagged and dropped them on the floor.
I retched, too, and looked about for a garbage can I thought for a moment I might need.
“Maggots fester in dead tissue!” she practically shouted at them as the two daughters ran out, sobbing.
“This is a corpse. I have never been so disgusted in my whole life.” Morty peeled off her gloves and threw them in the garbage. We both went over to the sink to wash our hands.
We went outside the room to get as far away as allowed and possible from the situation.
“A corpse doesn’t disgust me, but nursing a corpse does,” she said. It was the first time I had ever heard her voice go quiet.
“If he was really a corpse, I wouldn’t feel as bad, but he’s a living human being that we are heaping this indignity upon,” I said. “Who knows what he’s feeling?”
“They treat prisoners of war better than this,” Morty said.
“We’re torturing him, whether he feels it or not.”
“ARE YOU SUGGESTING that our treatment of Mr. Bellissimo is futile?” Dr. David Bristol asked me on rounds when he heard my complaints.
“Please don’t put words into my mouth,” I said. “I didn’t say that.”
“You – and many of the nurses – have been implying it.”
“Okay, yes, I’ll say it. What we are doing is futile.” It felt so strange to say that word. It was a word I’d never said before. I’d never tasted it in my mouth before. It was so concentrated and bitter.
How could I do this work if I thought any of it futile?
“Futility.” David spat out the word. “Can you define it for us?”
He waited and the team listened closely with him.
He’d trapped me into doing something that was against my nature. Futility meant there was no hope, and if nursing had taught me anything, it was that there was always reason to hope. If one knew what to hope for. Not always hope for a cure or a complete recovery, but hope for peace, comfort, and dignity.
“Futility? I can’t define it exactly, but I know it when I see it,” I said lamely.
“That’s not good enough,” he said, amused at my discomfort. “Give me proof.”
“It seems to me, David, that we’re being devious here. Families see all the technology we have to offer and they want to believe it can help their loved one, too. They don’t know enough to decide whether or not it is warranted. They don’t want to have to make those decisions themselves. Who can blame them? We all know that someone of Mr. Bellissimo’s age who has this many serious medical problems cannot survive. Yet we act as if it’s a possibility. We expect t
he family to help us choose – do they want inotropes? Compressions? Dialysis? Shocks? All of the above? We make it like a Chinese menu – one from column A, one from column B, and they have to place the order all by themselves.”
“No sub-sta-too-shuns,” said Morty, but for once, her interjection didn’t break the tension.
“And,” I said, “we’re not doing enough to interpret these situations for families so that they understand the implications of their decisions. The public is informed by pop culture, television, and sensational stories in the press. People hear about miracles cures, overnight recoveries, and unexpected successes. They have no idea what’s really in store for them when they come here and they’re in no state to make rational decisions. They’re worried that someone will accuse them of not doing the right thing or they worry that they won’t be able to live with themselves afterwards. Their decisions are based on fears of possible regret. The responsibility is too much for them to bear.”
I stood there recalling another discussion on the subject of futility. It was a terrible argument I’d had once with my husband, the most positive, optimistic person I know. I told him how angry I was and how I had tried so hard to get along with him, but that it was no use.
“I have tried and tried to communicate with you,” I said. “I can’t try any more.”
“There can never be enough trying,” he yelled back at me.
As angry as I was – and, thankfully, we eventually made up – even in those heated moments, how I loved his hope, in the face of my temporary loss of faith.
“Tilda, if you can’t handle this situation, I suggest you not take care of this patient.”
“David, you’re right. I can’t handle the situation. Do you want to know why? Because what we’re doing to Mr. Bellissimo is wrong.”
Most doctors just couldn’t make the switch. To them, even an artificial semblance of life was preferable to what they saw as the worst possible outcome, the failure of all their efforts: death. Something preventable, diagnosable, or treatable must have been missed. Perhaps it was born out of a fear that some family member would come forward and accuse them of an oversight, or of not trying hard enough. But perhaps because of our immediate, first-hand proximity to our patients’ suffering, most nurses felt differently.
“When it comes to doing deaths, you guys are like Wayne Gretzky trying to figure skate!” said Morty and finally managed to get a weak semblance of the reaction she wanted out of them.
THE FOLLOWING WEEK, Dr. Huizinga was the attending staff physician, and he was the next to have to face an unruly insurgence of the rabble. We accosted him with our outrage and indignation.
“Talk to the daughters about withdrawing treatment!”
“Enough is enough!”
“It’s time to let nature take its course!”
“We’ve gone too far this time!”
“It’s refreshing to hear the nurses’ perspectives,” he said, stepping back from us. “Frankly, it’s one I’ve tended not to pay much attention to. A physician has to be optimistic. It’s difficult to be the bearer of bad news. Perhaps we avoid these conversations with patients because of our own discomfort. Perhaps we don’t take the time to explain everything thoroughly.”
“We lead people to believe that we can cure everything,” I said.
“You’re probably right,” he conceded unhappily. “Ah, medicine is an art, but patients expect doctors to be scientists and know everything,” he said.
Spoken like a true scientist.
Later that day, Mr. Bellissimo’s daughters came to me with a suggestion.
“If Dad’s brain is damaged, could he have a brain transplant?” Their eyes were bright.
I looked at them, stunned. I didn’t say anything. I didn’t know where to begin.
“And another thing,” said Maria, “my daughter read on the Internet that breast milk can help people fight infections.”
“What?” Were they prepared to offer some?
“Yes,” she said, “breast milk boosts immunity.”
“Where are you going to get … it?” I inquired.
“Isn’t there a maternity ward in this hospital?”
“No, there isn’t any more.” It was true. Our “general” hospital had become so specialized that something normal like the birth of a baby or even the routine removal of an inflamed appendix was not performed. “There is no maternity ward here,” I said unhelpfully.
“You think because he has cancer that he’s a lost cause,” Maria said to me as a warning. “Don’t give up on him so easily. He’ll surprise you.”
THE BELLISSIMO CASE made me recall a patient I’d once taken care of who was a survivor of Auschwitz. I needed to insert an IV and the best vein I could find was a beautiful thick one running right through the concentration camp number tattoo on her arm. Perhaps this place now will give life, not remind her of near death and total evil, I rationalized, as I slid the angiocath into the compliant vein and received my reward of the red flashback of blood to tell me that I was in the vein.
I couldn’t help myself but ask the husband to tell me about what his wife had been through.
“They called her Christine,” he said. “They changed her name from Esther and hid her. She was lucky one, see? Blond and blue eyes. But they found her and sent her to the camp.”
“Which is worse,” I had to ask, “this or that?” I shuddered.
“That,” he said without hesitation and stared at me, unblinking.
Together, we took a look over at her. Her hands, contracted into hardened claws, scraped at the air as if trying to escape. Her face was frozen into an anguished, contorted grimace.
“She survived that horror … hasn’t she been through enough?” I guess I gave myself a certain licence to be familiar in this case, to push my questions past a barrier I had never crossed before.
“She survived that, she’ll survive this.” He sat down to read a Yiddish newspaper, one that looked like it had survived the war, too.
BETWEEN THE TWO of them, Mr. Bellissimo’s daughters kept up the round-the-clock vigil. However, eventually Theresa had to return to her family and work, but Maria was there when I came in one morning. I encouraged her to tell me about her father. I listened to how he had tried in vain to persuade her daughter not to marry a boy from Trinidad and how he had loved the delicious lasagna she made. Maria trimmed his beard, smoothed the blankets, and exchanged the blue one for the yellow one. She rubbed his feet and put mineral oil on them.
“We’re not religious,” she explained, “but we were brought up Catholic, taught to respect our father – even if he doesn’t exactly respect us.”
“What do you mean?”
“He’s a tough son of a – excuse me. He’s very … strict.” She pursed her lips. “Anyway, we’re hoping for the best, but trying to be realistic.”
“Do you understand the situation?” I asked.
“Yes, but we believe he’ll make it. I asked Dr. Bristol if there was any chance he’d make it and he said that there’s less than 1 per cent chance. But even if that’s the case, we’re willing to take it. All we’re asking for is a 100 per cent effort. It’s worth it for a human being, don’t you agree?” She pulled a Blue Jays baseball cap out of a plastic bag she’d brought with her and then a Maple Leafs cap and put one on either side of her father’s swollen head. Diagonally across his body, she draped a banner that said Forza d’Italia in red, green and white.
“REMEMBER JOAN HOUSLEY? Why can’t more families be like hers?” the nurses asked one another.
When they realized that a cure for their mother’s advanced cancer was not possible, Mrs. Housley’s husband, Jim, along with their three daughters, Jill, Janet, and Jenny, all agreed when I suggested we turn off the cardiac monitor and focus our attention on her comfort and dignity, on Joan herself. But I had had to make my case before the team, beforehand.
“It’s not as if we’re going to treat an arrhythmia, are we? We’re not going to do CPR,
right?” I argued. I saw Daniel considering this radical move I was suggesting. “I’ve heard you say it yourself, Danny, ‘Don’t do a test unless you’re prepared to treat the results.’”
I saw how difficult it was for him to shift his thinking, how hard he had to work to restrain himself, to do nothing and not feel the ensuing sense of defeat.
The night Joan did arrest, Tracy and Nicole sat with her until her family arrived. The resident on that night was young and hesitant. He hadn’t got to know her as we had.
“Don’t you think we should give it a try?” he said. “Just one round of CPR?”
“No. We know her wishes.” I stood firm. “She told us, herself.”
“But no one documented it,” he whined.
“Trust me,” I said.
After six weeks, the Bellissimo daughters hardly visited any more. Even Maria called only occasionally or sent a fax of her questions or suggestions. A lone granddaughter came a few times.
“He’s leaking on me,” she said, holding up her scarf to show me.
“His skin is falling off,” I said. “It happens when the person is …” Dead, I wanted to say … “Terribly sick.”
“What would happen,” she ventured – and I knew exactly what she was going to ask – “if everything were turned off?”
She wouldn’t dare ask this question if her mother were there, so I answered quickly, in case she arrived. “Your grandfather’s condition is so fragile, so close to death, that if even one thing was turned off, or turned down even a little, like this oxygen dial,” I pointed to it and circled my fingers around it gingerly, “he would probably die in a few minutes.”
The nurses charted extra-carefully. Not only the fluids in and out, numbers up and down, but also what was done and not done, what was said, and not said.
“Defensive documentation,” our nurse manager advised us.
“A family meeting,” I said to the granddaughter in a staccato short form that this desperate situation seemed to warrant. “We need one.”
