by Tilda Shalof
“Now let’s see how you’re doing with your breathing exercises,” my no-name nurse says, unperturbed by my outburst.
I look at the spirometer on my bedside table. Too hard to reach it, maybe later. “Could I have my pain pills, already?” She’s late bringing them to me.
“I gave them to you already. They’re in your hand. Here’s a cup of water and here’s your spirometer.”
Who are you, anyway? Why should I listen to you? You don’t have a name and you’re wearing the same uniform as the housekeeper who swept my room and the lady who brought me my food tray. How long have you been a nurse? What are your credentials? I think but keep quiet, stewing to myself.
“How are you feeling?” she asks, watching me while I do my breathing exercises.
“Not great,” I answer curtly.
She smiles soooo sweetly at my sour self. “What you’re going through is normal. Many patients feel like this in the first few days after cardiac surgery and you went through a hard time, losing so much blood.”
Stop being so nice. I look away. And why are you treating me like a baby?
She wasn’t, but I’m acting like one. Adults are not supposed to need the coddling and cajoling we give to children, but sometimes you do when you’re a patient.
I admired Ashley, a respiratory therapist in the ICU, and her way of talking to patients. We were taking care of a middle-aged woman who had chronic obstructive lung disease (COPD) and she was weaning off the ventilator. We wanted to extubate her, but her condition was iffy and we weren’t sure if she would “fly.” Ashley believed she’d have a better chance of success if she’d temporarily use a Bi-Pap mask to help her transition to an ordinary oxygen face mask. It would help keep open her alveoli, the parts of the lungs involved in the gas exchange of oxygen and carbon dioxide. But the mask is tight and uncomfortable and makes some patients feel claustrophobic. Ashley explained everything slowly and simply. She held the patient’s hand the whole time, urging her along, praising every tiny effort. The patient coped with the restrictive mask successfully. Afterward I complimented Ashley on her bedside manner.
“That’s how I talk to patients at my other job at Sick Kids,” she said, referring to the Hospital for Sick Children (another of my father’s pet redundancies – “What other kind of children are in a hospital?”). “If we take the time and explain it to the kiddies, and sit with them every step of the way, we’re more likely to get their cooperation.”
I take my pills with a sip of juice from a plastic straw. Staring at the straw for a moment, a thought occurs to me. Its opening is fairly close to the circumference of my aortic valve. That’s the surgeon’s workplace; nursing encompasses all the rest.
“May I have a look at your incision, to check that it’s healing well?” Amrita is her name, she tells me when I ask, and apologizes for forgetting to introduce herself. I open my gown for her to change my dressing. She gently removes the surgical tape from my skin and cleans my incision, which is dark red with dried blood, only a few inches long, and appears to be closing well. Amrita gives me a box of bandages, cleaning solution, and tape, everything needed for dressing changes, and suggests that I could do it myself. She’s right. The best care is self-care, as Nurse Deanna would say. Amen to that. Patients come to the hospital to work, not rest. As a patient, your job is to do as much as you can for yourself. The more you do for yourself, the quicker you’ll get out of here and the better for everyone, mostly yourself.
Suddenly, the patient in the room next door calls out for Amrita, who is his nurse, too. He’s always in his room because he’s too unwell to walk and also because he’s in isolation for MRSA. Before anyone goes into his room, they must first put on the gloves, mask, and gown. Each time the nurses go in, they’re in there more than an hour. The moment they emerge, he calls them to come back in, saying he’s uncomfortable and asking to be repositioned.
Sorry, Amrita apologizes, but she can’t show me the dressing change now, perhaps later? “You know how it is, don’t you?” Yes, I do and it’s not pleasant being on the receiving end of it. Nurses are constantly being interrupted or pulled away from helping one person to help someone else who needs us even more. These choices can be fateful. Once when I was working on the floor, I popped in to check on a patient. “Will you stay with me?” he pleaded. “I’ll be back in a few minutes,” I told him and rushed off. When I returned, a few hours later, he had died. It was his time and it had been expected, so it wasn’t an emergency, but I felt so guilty that he didn’t get his last simple request and died alone.
Let’s hope I don’t die on you, I’m tempted to call out to Amrita as she rushes off. Just kidding!
Where is my nurse? Where did Amrita go? She’s left me here to stew in this heat! For some reason, my room is swelteringly hot. Outside it’s summer and in here, there’s warm air blasting out of the radiator. I sit, fanning myself. Can’t the ward clerk call Central Control and get them to fix the thermostat? It’s a remote call centre – probably in Nova Scotia or Karachi – but they can dispatch a local technician. I feel sooooo hot and sweaty. Let me out of here! I want to go home right now, this minute! Oh, but please don’t kick me out too soon, before I’m ready.
I know I’m being unreasonable and well on my way to earning myself the worst diagnosis – “difficult patient.” When did I go from easygoing and grateful to demanding and obnoxious? I’ve always said patients are angry at being sick. They take out their anger on everyone around them, the easiest targets being nurses. Here I am doing the same thing. We have lost control of our lives, are forced to comply with seemingly arbitrary hospital routines, have to request painkillers, and wait to receive our meals when it suits others, not when we want them. I don’t think I’d ever realized just how far a hospital takes people from their own lives and comfort zones.
Then I start, once again, just as I did in the early days of this journey, to conjure up the worst possibilities; my mind floods with scary thoughts. By this time “mindfulness meditation” and “being in the moment” have completely flown out the window. What if I go into cardiac arrest? Will they know to call a code? Do they know what the hell they’re doing? They’re all so young! I get up out of bed and go out in the hallway, straight to the crash cart, parked up against a wall behind the nursing station where I’d noticed it earlier. Pacemaker cables present and attached, ample supply of ECG electrodes, epinephrine, atropine syringes; defibrillator paddles, charged to 100 joules. Everything is present and accounted for. Oh, but I see it was already checked this morning at 0745 hours, by Syesha, RN. Okay. Never mind.
I return to my room to fret about all the “what ifs.”
In the afternoon, I am tired but force myself to attend a cardiac information class where I meet other patients, most of whom have worse problems than mine. One woman in her thirties has a tumour on her heart and has been in hospital for almost a month. You have to be mighty sick these days to stay in hospital that long. She looks in better shape than me, but her problem is serious and she’s worried. There is a man in his twenties, tall and blond in a light blue bathrobe, who, unbelievably, had triple bypass surgery for blockages in his coronary arteries. He wants to know when he can drive his car and have sex again.
“What about hunting? When can I shoot my rifle?”
How about never? I scowl at him. You Bambi killer, you.
A tanned, well-groomed, plump woman who looks about my age says, “I’ll be sixty-eight years old this year. Is it too late for me to change my attitude about being heart healthy, like diet and exercise? Is the damage already done?”
No, of course not, the nurse educator assures her.
An elderly, regal woman wearing makeup and dressed in a silk kimono says, “I’m ninety and I’ll be satisfied if I make it to ninety-one. I’m tired of doing housework.” After the class she corners me to show me photographs of her grandchildren, but I’m in no mood to ooh and ahh and besides, they’re not nearly as adorable as she claims.
B
ack in my room, a lunch tray waits for me. My blood sugar has normalized, but they still have me on the diabetic diet with artificial sweeteners and low calorie counts. I don’t have the energy to complain because the food is terrible and, besides, I’m not the least bit hungry.
Not many ICU patients are well enough to eat, much less enjoy food, but I’ll never forget one feisty senior who was. Well into her eighties, up and about, she was impatiently waiting to be transferred out to the floor. Since her bed wasn’t ready for her yet, and she’d be staying with us for a few more hours, I ordered her a dinner tray. After taking one look at the soggy green beans, the artificial mashed potatoes, and the lumpy grey mass of stew, she was aghast. “What do they take us for, serving this dog shit?” The food insulted her. “The nerve of them!” she ranted. Then the kicker: “If I eat this slop, it will make me sick.”
I agreed. It was sickening. I wished I had a bowl of homemade vegetable soup, or something similarly soothing, to offer her. Chinatown was nearby and I thought of running out to get the rice congee that I’ve learned from Asian friends is their comfort food, especially when recovering from illness. Once, a patient’s husband asked me for a bowl of soup for his wife. No soup for you! I had to tell him, sorry that I couldn’t offer his wife that tiny comfort. There is no longer a proper kitchen in the hospital. All “food” is outsourced and produced in a factory off-site. It is impossible to provide a homemade, wholesome meal in the hospital. Why does it have to be this way? It makes us lose faith in the hospital as a place that promotes healing and wellness.
I’ve completed two circuits around the ward and on the way back from the third, I check out the arrest cart again. Angiocaths, oral airway, chest tubes, intracardiac needles. There’s even an open chest cardiac tray to perform emergency open-heart surgery right at the bedside, if necessary.
As I make my way past the nursing station, I happen to see my chart on the rack. We’re moving toward electronic medical records but we’re not there yet. There’s still a paper trail. Mmm … I wonder if they would let me read my chart? There’s no one to ask and it’s probably not even allowed without a hospital official in attendance. Besides, asking to read my chart might make them think I don’t trust them and I do.
For me, it’s always been one of the hardest things to care for patients who don’t trust. There have been some cases when their mistrust is justified. One patient’s son refused to have his mother transferred to a floor where a certain nurse worked.
“That nurse almost killed my mother,” he claimed.
I found out that his mother had had a feeding tube that had two ports, one for injecting liquid nutrition and dissolved medications, the other for a small balloon to anchor the tube in place. A nurse had repeatedly used the wrong port, causing the balloon to rupture, allowing liquefied meds to spill out into the abdominal cavity. After a long, painful, and entirely unnecessary period of illness, his mother succumbed to sepsis and bowel perforation and died.
When a fatal mistake like that happens, trust is irretrievably lost. However, an equally vexing situation is when there’s mistrust and suspicion without any apparent reason, especially in the face of every attempt on the part of the staff to win that trust. That was the case with Trevor Sherman and his wife, Francine.
Trevor had end-stage liver disease from cirrhosis and hepatitis C. He lived for years with these chronic illnesses but eventually developed respiratory problems and kidney failure. Pneumonia brought him back to the hospital and eventually to the ICU, where his condition was rapidly deteriorating.
His wife, Francine, who was a nurse, stayed at his side at all times to supervise her husband’s care. For five weeks, she lived in our ICU, only stepping away for a meal, a quick shower, or to use the bathroom. “I need to be here,” she told me. “I am as essential to him getting better as the medications.” But she openly admitted that her vigilance was also due to her concern that we were not caring for him properly. She tried to cherry-pick which nurses were assigned to Trevor and inquired about each nurse’s educational qualifications. She quizzed us on our knowledge and rationale for everything we did. She observed us while we gave medications and changed his dressings, and she frequently found fault with our technique. All the while, she kept notes in a journal and on her laptop.
Of course patients have every right to take notes and there are even some good reasons for doing so, but there are times, especially when relations are already strained, that note-taking makes staff intensely uncomfortable. It feels like the family is gathering evidence for a lawsuit and that puts everyone on edge. At the very least, it can give the impression that they are distrustful and wary of us. One nurse found a notebook a patient’s wife had left behind. It was wrong of her to have read it, but she did and told us what was written in it. The notebook contained a list of the “good” nurses and the “bad” ones (by the way, there were some excellent nurses on that bad list), along with insults and racial slurs: “Nurse Constance is a nincompoop.” “Ashraf should learn English. Must bring an atlas so he can point out where he’s from. Wherever it is – he should go back there!” “Bonita needs to brush her teeth more often. Stinky breath.” We wished we didn’t know what she really thought of us.
But with Francine, no matter what we did, we couldn’t enter into a partnership with her in caring for her husband. She was hellbent on seeing us as adversaries. Despite talking with her, offering explanations and constant reassurance, she ignored what nurses said and listened only to doctors. Eventually she lost faith in them too. I saw it happen abruptly the day the team sat her down to tell her there were no more medical treatments that would benefit Trevor. All we could offer was supportive care.
Why were we giving up on him? Francine demanded to know. When were we going to start dialysis to treat his renal failure? What about trying a more powerful ventilator? she asked and specifically named the machine she wanted. Weren’t there new drugs and different combinations that could be tried? Why wasn’t he a candidate for a liver transplant? What about a kidney?
At Francine’s insistence, dialysis was started, more meds administered, and further investigations ordered. Offended by our gentle questions about his resuscitation status, she wouldn’t allow any discussions about anything other than a “full code” in the event of a cardiac or respiratory arrest.
“Not everything can be explained,” Francine said to me privately after the family meeting to discuss Trevor’s treatment plan. We were back in his room, the three of us – Francine and I sitting together beside Trevor’s bed, where he lay deeply unresponsive and on maximum life support. “Doctors don’t know everything,” she said to me and to herself, it seemed. “Haven’t you ever cared for patients you thought weren’t going to make it and did?”
It is only after a certain period of time has passed and much consideration has been given that doctors will ever say, “There is no likelihood of recovery” or “Resuscitation efforts would be futile.” Those grim words are rarely used and only in situations when all options have been exhausted. But yes, in my experience, every time doctors arrived at that difficult and painful conclusion, it came to be. However, I didn’t think Francine really wanted my answer, so I didn’t offer it. It would only end up in a discussion of statistical probability and I was no match for her logical mind. Instead, I asked her the questions we needed to know the answers to in order for us to provide patient-centred care to her husband.
“Tell me about Trevor. What is important to him? What are his values and beliefs? Are these extreme measures what he would want?”
“Absolutely.” She was emphatic. “I know for a fact that he wants every chance to live. We talked about it many times and he said he wanted to go the distance. He’s not one to give up when things got tough. He’s always said he’ll go out fighting.”
From what she said, I felt resolved with what we were doing, but the bigger problem I had – we all did – was the toxic atmosphere of hostility between her and the team. Far from partners in
caring for Trevor, we had become enemies.
I’ve heard it said that if you have to go into the hospital, you should make sure you have someone stay with you at all times. There’s a widespread belief that you need a “patient advocate” to be your watchdog, on guard and ready to fight for your rights. I’ve heard nurses themselves say they’d stay around the clock if a family member of theirs had to be hospitalized.
If families wish to stay with the patient because they know that the nurses are overworked, understaffed, and not always able to meet all of the patient’s need, and they’ve come to help with the patient’s care, that should be encouraged and enabled. However when families come to oversee, supervise, monitor, challenge, micro-manage, and find fault – that is not helpful to anyone, least of all the patient. It all adds to the siege mentality and culture of fear in hospitals.
On a practical level, the goal we have to set our sights on is to ensure that there are enough nurses who have the resources they need so patients can receive the care they need. A harder, more elusive goal is finding ways to create more trust. In my experience, I have seen far more reason to believe that caregivers are doing the correct thing, and have the right intentions, than otherwise. If family members wish to stay with patients, it is best if they are willing to work with the staff to help care for the patient. True partnership is possible. I have seen it myself many times in the ICU where I work. How else could I have been doing this work as long, or as happily, and in the same place, if I hadn’t experienced it myself?
As for our relationship with Francine – it only got worse. She continued to try to direct every aspect of her husband’s care. She wasn’t like some family members who were misinformed, contributing odd or erroneous bits of information, or putting forth strong opinions about things they knew little about. (Most memorable was the patient who demanded that her dying father receive a “brain transplant,” something she claimed to have read about on the Internet.)
