by Tilda Shalof
“Yes, but are they truly hers or is she abdicating her autonomy to the Rabbi?”
What I had finally figured out was that Mrs. Green did not believe in the hallowed concept of individual autonomy. To her, religious law had the utmost importance, far greater than a human’s puny will or personal preference. We had to back right off, but not until Dr. Sandor gave it one more try. He had to ascertain that these were indeed Mrs. Green’s wishes. There wasn’t much time left. We both knew that the next crisis was imminent.
We went back out to speak with Mr. Green. The Rabbi stood with him outside Mrs. Green’s room. They did not wish to meet with the rest of the team in the “quiet room,” but would only stand outside Mrs. Green’s room and talk with Dr. Sandor, with me listening in. I understood that they would never speak to me directly, as it is forbidden for a man to address a woman other than one’s wife. The Rabbi stated his position to Dr. Sandor. “The Jewish view is that we are to be wise and prudent stewards of our bodies,” he explained, palms open, his hands outstretched. “It is our greatest endowment from Ha Shem.”
“It is not medically indicated to offer anything further to your wife,” Dr. Sandor said to Mr. Green, crossing his arms across his chest and widening his stance. “There is no chance for survival should she have another cardiac arrest.”
The Rabbi spoke. “If there is a straightforward and obvious treatment, it must be carried out.”
“We do not wish to impose harmful, painful procedures upon your wife,” Dr. Sandor said, again to Mr. Green, “because, first of all, they won’t be of any benefit and second, it would be inhumane to do so.”
“Some tortures are worth enduring,” the Rabbi said gently.
I watched Dr. Sandor as the Rabbi spoke. He looked good, and fit, but he’d aged. This work had aged us both. He continued, still addressing Mr. Green. “In my medical opinion it would be wrong and useless to attempt to resuscitate your wife if she experiences another cardiac arrest.”
“Is she is on life support?” the Rabbi asked.
“Yes. If any of the machines or medications she is on were to be removed, she would die.”
“Is she receiving sedation? She needs to be alert enough to hear the prayers.”
Dr. Sandor tried to hide his exasperation. “The main point here is that we need to clarify the plan in the event of a cardiac arrest. My opinion is there is no medical reason to perform CPR on your wife. It will not benefit her in any way.”
“Are you saying there is no possibility whatsoever that it would bring her back?” the Rabbi asked.
“It is highly unlikely.”
“But didn’t you say she has pneumonia? Can’t that be cured with antibiotics? Hasn’t she recovered from similar crises before? Are you basing your recommendations on what you would want? It is not within our moral jurisdiction to decide if a life has no quality, or is not worth living.” The Rabbi pursed his lips in consternation and glanced at me. “We, the Jewish people, believe in a sacred reverence for all life. Even this nurse knows that.”
This was my chance to jump into the fray. I glanced at Mr. Green and he averted his eyes and turned to the Rabbi, who looked at Dr. Sandor. “From what I understand, Halacha – Jewish law – prohibits us from shortening the life, but what does it say about prolonging it unnecessarily?”
“You should know better, Tilda,” he said, and invoked again the highest imperative, which is the rescue of a human life, something to be attempted at all costs.
Finally, I was beginning to get it. To them, suffering was worth it for even another moment of life. Mr. Green’s wishes, his wife’s wishes, were irrelevant. All that mattered were the wishes of “Ha Shem” as the Rabbi understood them.
“Regardless of what we do or don’t do, Mrs. Green is going to die,” Dr. Sandor said.
“That is not for you to decree.” The Rabbi turned and walked away and Mr. Green followed after him. I stood alone in the hall with Dr. Sandor. It is sometimes hard to read his feelings, but there was no mistaking them now; after that encounter, he looked sad.
“Aha,” I said, putting my arm around him, “you do have feelings. I just saw them.” I detected a tiny smile. “You know what, Imré, I have come around to your point of view. I think there are times when what we do is futile.”
“I’m shocked, Tilda! I thought you didn’t believe in the f-word,” he teased me back.
“Perhaps the antidote to futility is meaning. If something has meaning to someone, that redeems it.”
“Well, you’re too late in coming around, Tilda. Ethicists don’t even use the term futile any more because it is too value-laden and open to interpretation. We differentiate between physiological futility and quality of life futility,” he explained, always the teacher.
“I understand the Green family now,” I said, eager to draw to an end this complicated discussion, “but it’s still hard to be her nurse.”
It was during that fifth ICU admission that Mrs. Green had a final cardiac arrest. We were unable to revive her after a resuscitation attempt that went on for more than two hours, during which we did everything we could until there was nothing left to do. But at least, all the time that we were trying, we felt resolved about what we were doing as we knew that these were her wishes.
“We must not tamper with the soul,” she told me in one of her last moments. “Quality of life is not the issue. Life is the most important thing.”
MY UNDERSTANDING of Mrs. Green’s choice helped me accept it. I also had a deeper understanding of Mrs. Ford’s. However, just when I thought I was getting a handle on these complex moral, ethical, and spiritual matters, I heard a story that raised new questions. I was walking past the nurses’ station when Louise saw me and called out, “Hey, Tilda!” Louise must be fifty, but yoga classes and good genes make her look thirty. Petite and delicate, she leaned over the countertop and grabbed my hands with surprising strength. “Have I got a story for you!” Who had time for stories? It was insanely busy and who should know that better than Louise herself who was in charge of the ICU that day? We were short six nurses, and patients were being admitted and transferred out all day. I assumed she would tell me the story later, if we managed to get a coffee break.
“I’ve got to tell you now,” she insisted, pencilling a name in the staffing book and then setting it aside.
I motioned to someone to cover for me, that I’d be back to my room in a minute or two, and leaned over the counter with my elbows resting on the ledge. Louise’s eyes locked with mine and held fast.
“You’ll want to get this down,” she said, her eyes sparkling. She could hardly contain herself.
I reached over the countertop to grab a few scraps of paper that our ward clerk leaves for us to record lab results and telephone numbers. “Shoot,” I said, my pen poised. As she began to speak, it grew quiet around us. Tracy took over Louise’s work for her. Other nurses moved closer to listen and others moved out of the way as if to clear a path for this story to be told.
“Has it ever happened to you, Tilda, that you love a friend’s mother like your own?”
“Yes.” I thought about Bunny, Joy’s mother, and other borrowed mothers, both past and present. I felt a swell of all the mother love they had offered me and all that I felt for them.
“You remember I told you about Alice? She’s my best friend Meredith’s mother. I loved her like my own mother. Last year she was diagnosed with lung cancer and I made a promise to her that I would help her when the time came.” I nodded. “Oh, I wish you had known her! She was brilliant and very strong-minded. She read everything – you’d have loved her, Tilda. But during her last year, she struggled to breathe and couldn’t get around. She had no appetite and lost forty pounds. One day she told me all she wanted was a cigarette, just one. She already had lung cancer, so why couldn’t she have one? She enjoyed it so much. She had a right to that bit of enjoyment, don’t you think?” We nodded and Louise took a deep breath and closed her eyes to help her find her place i
n the story again. “A few days ago, Meredith called me. Her mother was in distress and they took her to the hospital. Alice said, ‘It’s time. I want Louise here. She’ll know what to do.’ I said to Meredith on the phone, ‘Just don’t let them start feeding her. And no intubation.’ Then I got in my car and booted it up there. I was going so fast, the police stopped me but when I explained why they let me go. Alice was so relieved to see me. ‘Can we do this?’ she asked, and I told her, yes. Of course by that time she had a feeding tube in place and the crash cart right by her bed. Oh, it drives me crazy, Tilda! Not every person needs CPR before they die!”
I nodded and reached over for a few more of those little slips of paper to get all of this down.
“Well, Alice was very anxious and having difficulty breathing. She was on a self-controlled pain medication pump, but I think she was too stressed to use it, so the first thing I did was push the pump for her and then I asked to have the dose increased. Soon, she drifted off to sleep. A doctor came in and asked why she was so out of it. He said they were taking her for a CT scan and then a pleural tap to drain the fluid in her lungs, but Alice had already told them she didn’t want any more procedures or interventions. ‘Who’s the one with some medical background?’ the doctor growled. He must have sensed a threat. I waved my hand to show I was the guilty party. ‘I’m an ICU nurse, for twenty years.’ He asked if Alice was still smoking. Alice heard that and pulled off her oxygen mask to ask me, ‘Do you think it would have made a difference if I had stopped smoking?’ I told her, ‘Why take this with you? You loved smoking. You had a wonderful life. Let it go.’” Louise rolled her eyes. “I arranged to have Alice transferred to a palliative care unit. Oh, it was beautiful there and we could all be with her. Alice asked me to make it happen faster. I would never do that, but I had to find the balance between keeping her comfortable and not speeding up her dying.”
“Louise, phone’s for you,” the ward clerk interrupted. “It’s the OR. The patient is coming out in twenty minutes. Will the bed be ready?”
She nodded. We all knew she’d be returning to her efficient, responsible self in a couple of moments, but there were still a few details she had to tell. “Alice looked at me and gave me that stare. You’ve seen it, right?”
“You mean the one right before?” I asked, and Louise nodded.
“She looked right at me and asked, ‘How will I know when I’m dead?’ Tilda, it was extraordinary. It had been an overcast day, but at that moment, the sun broke out of the clouds and Alice’s bed was filled with sunlight. She looked like an angel lying there and I knew exactly what to say: ‘Alice, you’ll know you’re dead when you’re looking down at us.’”
We were in a frieze of reposes, still and quiet, listening with our entire bodies.
“Alice looked me in the eye and said, ‘I’m dying, aren’t I?’ I said, ‘Yes, Alice, you are.’ It was the most amazing thing to see someone completely aware, experiencing her own death. She was saying goodbye and beginning the journey of leaving us behind. She was excited. She believed she was going on to something else and she was not afraid. I had promised her I’d keep her pain-free and comfortable and I did that. She was aware right up until the moment when she wasn’t aware any more. I thank my lucky stars I had the skills to be able to help her.
“Then she started Cheyne-Stoking, with gasps and long pauses and then another gasp and a pause. The family was distressed at her breathing, but I explained that this was natural and expected.”
I’ve seen how the “death rattle” unnerves many people, even some nurses. It is raw, animal-like, and different from any other sound on earth. Many interpret it as a cry of distress, but when experienced nurses hear it, they feel a sense of peace and relief. They know the person is unconscious, feels no pain, and that the end is near. The families are grieving, so nurses turn their attention to them. I’ve seen families become desperate to have a fast transition from life to death, like what they’ve seen on hospital TV shows. They can’t handle the lingering passage in between. They want it over with quickly.
“The pauses got longer and then stopped. I put my ear to her chest and told them she was gone.”
“Wow,” everyone murmured. We’d seen many deaths but never one like that. In the ICU we are so reliant on machines to tell us when the moment has arrived. Most of us had not seen a death unmediated by technology.
Louise smiled. “At the funeral, the minister came over to me. ‘Ah, so you were the nurse who helped Alice in her last hours,’ he said. It was the proudest moment of my life.”
I DON’T THINK you could work in the ICU for any length of time and not think about your own death. Recently, I told Dr. Sandor my wishes in the event that I become critically ill.
“What about organ donation?” he asked.
“Yes, I want to donate my organs.”
“Tissues, too?”
Consistency and clarity decrease confusion, he’s always said. I hesitated momentarily, fleetingly recalling what Casey once told me. She said she would donate everything except her corneas. “I know it sounds weird,” she chuckled, “but I don’t want to be blind on the journey, wherever it is that I am going.”
But I felt differently. “Yes, all of my organs and tissues, too.”
“What about burial of the remains?”
“No, no burial.” He doesn’t mess around!
“Cremation, then?”
No, I told him about biodegradable internments I’d been reading about, about the body disintegrating, becoming fertilizer and rejoining the ecosystem.
“But isn’t that against your religion?”
Good question. I am still trying to figure out what I believe, but I am Jewish and Jews have been doing eco-friendly burials for years. Yom Kippur, the holiest day in the Jewish calendar, is supposed to be a death rehearsal when Jews fast and wear white just like the plain cotton shrouds that they are to be buried in. But even if one doesn’t have a religion, doesn’t everyone have something they believe in? Last spring, when it seemed like just about everyone was celebrating something, a feast, a festival, or a fast of Ramadan, Easter, Passover, or Diwali, I asked Boris, a hospital assistant who immigrated to Canada from secular, Communist Russia what he celebrated.
“Nothing,” he answered in his serious, but sweet way.
“Do you celebrate May Day, International Workers’ Day?” I tried.
“No, not any more.”
“What, then?”
“March 8 is the only day I celebrate,” he said with an impish grin.
“What’s that?”
“International Women’s Day.”
How could I forget?
But it finally all made sense to me last December 25 when I arrived for a day shift just as Ibrahim, another of our hospital assistants, was heading home after his night shift.
“Merry Christmas,” he called out to me with a wave.
“Merry Christmas to you, too.”
After all, isn’t the true spirit of Christmas what we all share? Perhaps it will be through the universal bond of values – justice, forgiveness, goodwill, and compassion – which all the great religions have in common, that Muslims like him and Jews like me can find the way to greet each other in peace.
* The number eighteen has the numerical value of the word life. A bar mitzvah is a coming-of-age ceremony at the age of thirteen. A corpse is not allowed to be left alone in order that the soul, which is in a state of bewilderment, will be accompanied and safeguarded until the time of burial.
* Do Not Resuscitate.
* Amyotrophic lateral sclerosis.
10
COMFORT MEASURES
It is only with the heart that one can see rightly; what is essential is invisible to the eye.
– Antoine de Saint-Exupéry
Today, twenty years after starting in the ICU, I call it home. To me, the work is just as challenging, exciting, fascinating, and at times, fun. But there are still situations that continue to puzzle and perpl
ex me. Take what happened just the other week.
After nearly three hours of non-stop activity, I finally emerged from my patient’s room. Mr. Rodriguez was a middle-aged father of two who had had a liver transplant two days prior. After a rocky forty-eight hours, there were now hopeful signs that his new liver was working. However, he was still on maximum ventilator support and unconscious. I had given him a bath, a shave, shampoo, back rub, and changed his bed linen. I made adjustments to his medications, gave him an antibiotic, observed his respirations, checked the ventilator, measured his central venous pressure, pulmonary artery pressures, and cardiac output, and compared all of these numbers against previous readings, and made additional adjustments to his medications. I went into the tiny anteroom outside the patient’s and stripped off my gown, gloves, mask, and goggles that we all had to wear to curtail dissemination of the bacterial infection he’d acquired while in hospital. I washed my hands, sat down at my computer to begin my charting, all the while keeping my eyes on my patient and the cardiac monitor. I was just about to take a sip of the coffee I’d bought earlier when several visitors happened to walk past and I overheard one say to the other, “See how the nurses sit outside the room? That way they don’t have to go to the patients as much.”
“Yeah, right. All we do is sit here,” I grumbled under my breath, but apparently not softly enough, because she heard me and turned back.
“Oh, I’m sorry, dear. I’m sure you are all working very hard.”
“No, I’m sorry,” I said, and we both fell over each other apologizing again, she for her offhand comment and me for my sarcastic retort. But it’s easy to see how she could get the impression we were doing nothing. Much of nursing care is invisible, especially to the casual observer. So many things we do are private and extremely intimate and take place behind closed doors or drawn curtains. And those “comfort measures,” the repositioning, those gentle, reassuring touches, the hugs, the understanding of things unsaid, the back rubs – and more – seem simple and trivial, especially when compared to the big-ticket items doctors offer, such as tests and prescriptions.