by Tilda Shalof
“You have a comeback for everything.”
“I’ve applied for a job in the OR. I won’t have to talk to anyone over there and I’ll just yell back at the surgeons if they give me a hard time.”
She was bluffing, but I feared one day she would follow through on one of her threats and leave the ICU or even nursing. What a loss that would be.
“DON’T YOU BELIEVE in miracles?” asked Gloria, one of the religious nurses. She was pinning a gold-coloured medallion engraved with an image of hands, clasped in prayer, onto her patient’s pillow, at the family’s request. She knew I was a heathen, an apostate, a heretic, but there was still a chance I could become a believer; it was never too late to be saved.
“Of course I do,” I said. “Well, to be honest, I’m not sure.”
“When patients get better, isn’t that a miracle?”
“I don’t think of it that way. When patients get better, I think that what we did worked. That they had the resources in them to respond to the treatments. I believe in God, but that’s not how I think God operates, granting or withholding miracles.”
Gloria tried to smile. “The patients I feel saddest for are the ones with no faith. What comfort can they have? Where are they going when they die? I can’t think of a worse or more frightening feeling. Those are the ones I feel sad for. The nurses, too,” she added slyly.
“The patients I feel saddest for are the ones where we humans interfere long beyond the call of duty and prolong their earthly suffering,” I said. “I feel we are torturing them.”
I was ready to leave it at that, each of us holding our different views, but I caught the expression in Gloria’s eyes: pity for me, clearly a lost lamb.
I DIDN’T EXPECT the reaction I received from some of the nurses in response to my research project.
“Do you think that my nursing care is any different if there’s a photograph at the bedside or not?” they asked, angrily.
“All patients receive the best care with or without a photograph!” others insisted.
“Photographs? They’re there, but I never even notice them,” a few reported.
“I can’t bear to see those photographs. They break my heart, especially when I realize that the patient may never look like that again, or return to that happy life.”
“There’s no need for a photograph when it’s an organ donor! It serves no purpose!”
“Get real, Tilda. Photographs are not the cure for cancer! Why are you wasting your time with such a trivial question?” This was Morty’s comment in response and she made a point of signing her name to my survey.
I explained myself first, to those who asked. “I need to get to know the patient I’m caring for. I can’t just care for a body or body parts. Our patients so often can’t speak for themselves and they don’t even look like themselves, so I need clues, a glimpse into their world. It makes my work more meaningful.”
“For me, it makes my work harder,” said Tracy with a sigh. “Once I start getting too personally involved, then I know it’s game over for me. You see them like they are in the bed and then the contrast in the picture of what they were like before, and it’s too depressing, especially if you know they might not get back to that picture of health again.”
“But some do,” Frances reminded her.
There were many sacred cows in nursing. Things we did just because they had always been done that way. If nursing was to be a science, we needed reasons and rationales for what we did. Did a patient need a bath every day? Was it better to alleviate a fever or let it run its course? What were the best methods to contain the spread of infection? Was a temperature more accurate taken orally or rectally? What was the best way to care for different types of wounds to foster healing? Were we adequately alleviating our patients’ pain? Were we doing enough to understand patients’ experience of critical illness? What helped people get through their ordeal and what wasn’t helpful? What should we tell them when family ask to bring children visitors? Was it possibly traumatic for the children? To my mind there was so much to study, questions to raise, ground to break.
THE RESPONSES TO my survey kept pouring in.
“Those pictures – I avoid them! It’s disturbing to see the way the patient was before, compared with now.”
“The photographs that families bring in are so depressing. I never look at them. You can still give good care without getting emotionally involved with patients.”
“But,” I reasoned with the ones who came to discuss the subject with me, “don’t you find they help you get to know the patient? I mean, if the patients can’t speak for themselves, how do you know the patient? What were they like before they got sick, what were their interests, hobbies, and professions? Who loves them? Whom do they love?”
“What do I care about all that? I can give good care to patients without getting into all of that personal stuff. They’re not here for us to get to know them,” someone said.
“But if you don’t get to know them,” I said, “aren’t you just doing just technical tasks? Don’t you feel a need to connect in some way with that person underneath all the tubes, wires, electrodes?”
I wanted to show them how I felt, yet I was beginning to see their point of view. These comments were coming from nurses I regarded highly. From nurses whom I would choose to take care of me or someone I loved. Was it just an idiosyncratic trait of mine, that I craved that personal connection? Perhaps knowing the patient as an individual wasn’t a requirement of the job. I could see how it could be an impediment and how for many nurses it made their work more difficult. Who could blame those nurses who tried to minimize that emotional cost?
But I had always noticed how touched families were when a doctor or a nurse became emotionally involved. When a nurse cried, or a doctor had difficulty giving bad news, when our expressions of sadness began to approach theirs and met them somewhere in the middle, however briefly, I believe they felt more cared about, listened to, and comforted, regardless of the patient outcome. Yet I knew the price that these emotions exacted of us.
“I’m like you, Tillie,” admitted Nicole, and Frances nodded in agreement. “I love those pictures and always look for them. Sure, they make me sad, but I still love to see them. Remember that picture of the grandfather with his grandson? The one where he was showing the little boy a bird perched on his finger? How about that elderly couple and how the wife made a collage of their life in photographs? Hiking in Arizona, snorkelling in Montego Bay. I loved the one where they were sitting intertwined. His arm was flung back against her face in a caress and one of her arms was draped across his knee, the other across the back of his shoulders. You had to look closely to be able to tell whose body was whose. He died, you know …”
“A GOOD RESEARCHER should be aware of any personal bias,” the statistician told me. I had made an appointment with her to go over the raw data and analyze the findings. “You seem surprised with your results. Are they at odds with your original hypothesis?”
I nodded. I was guilty of doing research to prove what I believed.
I couldn’t explain how the majority of nurses saw those pictures and needed to look away. How could I reconcile that most nurses, 82 per cent of them, reported that photographs helped them to get to know the patient better and at the same time 86 per cent stated that they found the pictures upsetting?
I presented my findings at a national critical care conference and as a result, another opportunity opened up for me. I was invited to participate in a large nursing research study, this one to determine the effects of nursing care on patient outcomes. Its purpose was to generate concrete evidence of the value of nursing care to patients. It would provide the proof needed to lobby the government for more nurses by substantiating that professional nursing care can decrease length of hospital stays, reduce complications, and improve patient satisfaction. But something in me resisted taking part in this project, even though I knew it was important work and that it was an honour to be chosen. The t
ruth was, I was reluctant to stray too far from the bedside. I wanted to work with patients and their families and, of course, nurses. What I had discovered was that the more I did it, the more I enjoyed it and the more there was to learn – because at the heart of it all was a mystery.
ONE MORNING, AS I was still mulling over this new career opportunity, I had a conversation with a patient’s wife that gave me ample proof – if I’d ever needed any – of the value of nurses’ work.
Helen Fisher came to see us. It was unusual for patients’ families to come back after we had transferred them out, almost unheard of if the patient died, as her husband had. He had been a patient in our ICU after a liver transplant and had developed an abdominal obstruction that required surgery, and then had numerous infections. He survived the ICU and made it up to the floor, but died a few weeks later.
“Every day when I came in, I found him in such a terrible state. He was left in such a mess,” Mrs. Fisher cried. “One day I came in and his colostomy bag was so full it had exploded. There he was, lying in his own feces. It was pouring into his wound! I called for help, but it took an hour before a nurse came and she said she wasn’t his nurse and she wouldn’t help him!”
It was appalling that a patient could be so neglected. Yet while I commiserated with her, I could at the same time envision the nurses’ situation and my heart went out to them, too. I knew the conditions on the floor and what the nurses’ workload was like. There were two or three nurses for as many as forty patients who were just as sick and needy as John Fisher had been. Nurses were running ragged in all directions, trying to meet everyone’s needs, handing out medications, changing dressings, taking vital signs, having to chart every single thing they did – all their efforts a sort of piecework marathon in a factory sweatshop. They were overworked and exhausted. No matter how much they tried, they could never master the work. They were Sorcerer’s Apprentices: each one filling buckets of water to empty an endlessly overflowing fountain.
What Mr. Fisher had needed was good nursing care and if the conditions had been right, he could have received it and it would have made all the difference, whether he had lived or died.
Privately, Helen Fisher confided even more to me. It was a moment so intimate and precious, and that she chose to share it with me is a gift I will always treasure.
“So I cleaned him up myself. Then I wanted to get him up to walk around the ward. But first he drew the curtains around and pulled me behind them. ‘Come here, Helen,’ he said, ‘I want to touch your breasts.’ There he was, so sick, so debilitated, and with a shit bag hanging from his belly, and he could still think of making love to me. Oh, how I adored that man!”
She cried in my arms, and other nurses who had also got to know her gathered around to comfort her as well. What research would capture that?
Perhaps I was foolish to dismiss the opportunity to participate in the research project, but I was loath to do anything that would put me at a remove from patient care. And I balked at the notion that we still had to prove what was obvious to most of us: nurses helped make people better. When could we just get on with doing our work? Why did we still need validation of our worth?
Even Florence Nightingale had done a similar research study during the Crimean War. She documented the work that the nurses did, the rate of infections of the soldiers and the number of their wounds that healed. She proved the effectiveness of professional nursing care by measuring outcomes way back then and here we were, over two hundred years later, still doing it.
“You don’t know what a nurse does until you need one. That’s the only way people understand it,” said Laura when I told my friends about the research study.
“They think going into research is the only way to advance your career,” said Morty. “Why is leaving the bedside always regarded as a step up? It’s because shift work is seen as demeaning. What do these administrators think goes on in this place ‘after hours’? Do they ever notice all the nurses streaming into the hospital when they walk out the door at the end of the day? Do they have any idea how marginalized we feel working during odd hours – nights, weekends and holidays, with no support staff, no places to rest or study during breaks, no place to get a healthy meal, no educational in-services or workshops, no administrators, teachers or nursing leaders during those off hours?”
“Hey, Morty! Would you get off your platform or soap box or bandwagon, or whatever it is you’re on, and get back to work?” chided Laura.
OVER THE YEARS, one by one, all the nurses who had teased me about my university degree and even those who had scoffed at the need for a nurse to even have a degree in the first place, were registering for university programs in nursing. They are completing their degrees – some even going on to do graduate work in nursing – and at the same time they’re juggling having babies, raising kids, finding child care, supporting a household, and working their fair share of nights and weekends as nurses. They do it because the pressure is on and they know they have to, to ensure their marketability. But once there, I see how they love learning and how higher education is transforming them into even better nurses.
“You don’t want to end up like another Laura or Frances, do you?” a nursing instructor asked me one day, after she heard that I had turned down the prestigious research job offer. “Nurses like them aren’t going anywhere. They’re staying right at the bedside. They’re going to be stuck there forever. Without a degree in nursing, their options are so limited. You have a degree, and if you go on to do a Master’s you could teach or do research.”
End up like a Laura or a Frances? Did I hear her correctly?
Did she know what I would give to be a nurse of their calibre? To have an ounce of their intuition, their skills, their wisdom and compassion? Did she have any idea how those nurses went by the book and followed all the rules and knew just when to abandon the book and the rules in order to save the day – and the patient? Sure, they could update their knowledge or learn new theories, or become teachers or administrators – but what a loss to patients that would be! I stood there, dumbfounded and dismayed that this teacher didn’t know this herself. How far removed some of our leaders were from patients.
THOSE SMALL SOUVENIRS and the personal photographs I come across at patients’ bedsides continue to intrigue me. Sometimes I think they are the only gifts our patients can bear. Even patients who are known music lovers can’t listen to a sonata if they are in pain. Nor do they seem to wish to be read or sung to. Their pain and discomforts overwhelm them and require their full concentration. No poetry, no music, no TV or radio for the critically ill. It is only when patients start to recover that they begin to tolerate these things, just barely and gradually. Beauty was too much for seriously ill people. There was even a sign at the front door of the ICU that prohibited it. “No Flowers.”
“Why?” I had asked Laura once. “Surely bright colours –”
“They’re a source of infection and many people are allergic. Then there’s the old wives’ tale that flowers gobble up too much oxygen, especially at night. Those scavenging tulips! Down, you nasty nasturtiums! You greedy roses!” She barked at an innocent potted plant sitting on the desk at the nursing station, to the amusement of the ward clerk sitting by the phone.
“I had no ideas flowers were so dangerous. And violent, too.”
Frances nodded. “Don’t you remember on the wards how the head nurse used to go around on evenings and take the flowers out of the patients’ room and put the vases on the floor outside their door?”
“Sounds creepy,” I said.
“Yeah, and then in the morning, they’d bring the flowers back.”
Morty began to sing the old ballad about where have all the flowers gone, a long time ago.
“But isn’t there more we could do to make the ICU a more pleasant place?” Tracy asked. “What if we had beautiful paintings, wall hangings, and quilts on display? What if we had a waterfall in here or a source of sunlight, or an indoor garden? Not
everything has to be functional, does it? Maybe being around art could help people feel better.”
“Yeah, why don’t we get some feng shui happening here?” said Nicole.
“Florence Nightingale wrote about this, too,” I said. “She said that the main thing a nurse could do was to put the patient in the best condition for nature to do the work of healing. She wrote about nutrition, fresh air, rest, light, cleanliness, privacy, a pleasing atmosphere, peacefulness, comfort, a cheerful environment.”
“Yeah, well, all that’s gone out the window,” said Laura. “If there was a window for it to go out, in this place. No windows allowed. We’re sealed in here like in a mausoleum. No fresh air. Why do you think our clothes and shoes are so tight by the end of the day? Why do you think we’re all stuffed up and sneezing when we come to work? There’s no circulation in here. Why do we have so much sick time? Why do you think we get headaches, especially in those rooms?” She pointed over to a few particularly poorly ventilated rooms that were rumoured to be migraine producing. “This is a sick place. Look at what we’re dealing with now.”
She pointed to our isolation room, where we had recently admitted a patient with a mysterious pneumonia. SARS (Severe Acute Respiratory Syndrome) had arrived and it was changing the way we did almost everything. Everyone was terming it the “new normal,” but how would things ever be normal again? There were many inconveniences and discomforts, but far worse than all of that was that now, each time we walked into a patient’s room, we were afraid for our lives.
In our hospital, we treated many SARS patients and suspected SARS patients. A few of them worsened and had to come to our ICU. It was terrifying to go in to the room and know that each time we did so we were putting ourselves, each other, and our families at risk. We coped by taking turns sharing the responsibility of caring for these patients. We offered one another words of encouragement and covered one another generously for breaks. Every time we went into a patient’s room, we helped each other don the bulky protective gear. First, we tied on long gowns and strapped a hefty negative pressure filter machine to our waists. Then we put on two or three pairs of gloves – taping them down tight at the wrists – bonnet and booties, and then goggles that fogged up and masks that pinched our noses raw. On top of all this equipment, we pulled on a full-length space suit that puffed out with the blowing of the negative pressure machine. We looked like roly-poly astronauts. It was unbearably hot and cumbersome as we worked silently and alone in the room, caring for a patient who could only see our eyes looking back at them over our masks. Somehow, once we met the patients’ eyes and saw how terrified they were, we found the courage to offer the care and comfort we were there to give. In many ways it was our shining hour. We congratulated one another and tried our best to keep up the morale.