Opening My Heart (27 page)

That incident happened a number of years ago, and looking back on it now, while I still admire Corinne’s daring and initiative, by today’s standards our outrage seems outdated. Nowadays,
surveillance is everywhere; it’s the new normal. We recently learned that “undercover” watchers from Infection Control have been covertly observing staff to evaluate compliance with hand hygiene – of course, justified for quality control purposes, but nonetheless, it took us aback. Cameras are now everywhere, certainly in all public places in the big city from parking lots and banks, to schools and day cares, so why not hospitals, too? Increased “security measures” are supposed to make us safer, but why doesn’t it feel that way? In the hospital, there are more rules and policies designed to protect privacy, more transparency and accountability, and full disclosure about “adverse events.” There are public forums and town hall meetings; reports about a hospital’s performance, full financial disclosure of the hospital’s budget, the surgeons’ rate of infection or incidences of complications for various procedures, even the annual salaries of the hospital’s senior administrators (probably to their chagrin) are easily accessible to all. Yet with all of these measures in place, it feels like the public’s trust is at an all-time low.

But when you’re a patient what choice do you have but to trust the institution and the people caring for you? You’re in their hands – literally. Oh, there’s been an attempt to rename patients “clients,” perhaps to create an illusion that we’re “consumers” making independent and rational health care choices. For hospital nurses,
clients
as a term has never caught on.
Patient
refers to a person you
care
about, a client is someone to be
dealt
with. To nurses,
patient
can be almost a term of endearment because it has the connotation of protection and watching over, of tending to. Admittedly, it also carries the meaning of being subdued and obedient, passive and helpless. However, take it from me, when you’re the one in the hospital bed – you’re a
patient!

Why
should
we trust the people taking care of us? Some of us
have our own reasons not to. Trust can’t be promised, guaranteed, or legislated; you can’t be convinced or persuaded to trust, and there are no policies, mission statements, or corporate philosophies that will ensure it. Yet you know when it’s there and when it’s not. But for trust to be effective, it’s got to be mutual and reciprocal. It’s a
relationship
.

The ultimate sign of one family’s distrust was a bright yellow Frisbee. It was hung in a patient’s window by her husband, who was dissatisfied with our nursing care of his wife. His hotel room was across the street and we could see him aiming a telescope on the room identified by the yellow Frisbee, spying on us while we took care of her. We joked that the stuffed dog he left on her bed was probably bugged. When he wasn’t there, we talked into its plush fur and said silly things. He didn’t trust us and we learned not to trust him. All in all, it wasn’t a very therapeutic atmosphere for the patient, his wife. Nor was the time that a family brought in a herbal tea for us to give to their mother. We had no idea what was in the strange-smelling concoction and they weren’t able to tell us, so we refused to administer it to her. That didn’t stop them from sneaking it into their mother’s feeding tube when they thought we weren’t looking. All in all, it’s better for everyone, but especially the patient, if there is mutual trust.

I try to fall back to sleep to escape my unsettling thoughts, but I can’t relax. Worse, to my horror, I get a whiff of my body. I stink. My last bath was that luxurious one two days ago in the
ICU
. I lie in my unwashed condition, too scared to get up and walk to the shower by myself. My nurse left soap and towels out for me and there’s a shower right in my room, just a few steps away. There’s no reason why I can’t get up. I have been given the green-light with
AAT
—Activity as Tolerated – on my chart, but with the slightest exertion, I feel short of breath and light-headed. How am I
going to get to the shower and wash my body myself? It seems monumental.

Still, I can’t sleep. My heart is beating rapidly. Breathing is difficult. I try to sit up but feel sore all over and fall back against the pillow. I’ve never felt worse.

It makes me think of morning rounds in the
ICU
when we were discussing a patient whose condition had shown no improvement after surgery. He had been critically ill, septic, and unconscious before surgery and was still now, afterward.

An eager resident pointed out to Dr. Hawryluck, “At least we didn’t make him worse.”

“No, we didn’t make him worse,” I remember her saying, then adding dryly, “but we set a much higher standard than that.”

Here I am, worse than ever. I’m even considering using the call bell or maybe trying to get up out of bed to hunt down a nurse when one appears at the door, but it’s a nurse I haven’t had before.

“Here are your pain pills, Tilda” she says cheerfully, “and these are your iron tablets and beta blocker, but first let me take your blood sugar and vital signs.”

She knows me, but I don’t know her and I can’t seem to summon the energy to ask her name. It is so important for nurses to introduce themselves and spend a few minutes to listen to their patients’ concerns right from the beginning of a shift. It’s absolutely necessary if you want to establish trust.

The nurse tells me that my blood sugar is normal. Next, I hold out my arm for the blood pressure cuff. She starts pumping. She pumps and pumps until she’s squeezed me up to over 300 mmHg and holds it there.

“That’s too tight!” I snap at her. “You don’t have to go so high.”

She releases the valve, but for some reason the cuff doesn’t deflate. I sit with my arm in a clench. I’m fuming, waiting for her to
release it. She doesn’t. I can’t take it. I rip it off my arm. Nonplussed, she flattens it out and is about to try again, but I stop her.

“There’s something wrong with that cuff. It’s broken. Try a different one,” I tell her, but she resumes pumping up my arm.

Why don’t you just forget about it?
Oh I know, I know, numbers have to be filled in for my blood pressure.
Just make something up
, I want to tell her. I was tempted to do that, once, when I was a young nurse. I was scared to wake up a patient who was peacefully napping when I came into the room to take his blood pressure.
Let sleeping dogs lie
, I thought. On the other hand, what if his heartbeat is irregular or his blood pressure abnormal? I took a look in his chart. The last reading was 128 over 76. I eyeballed him. He looked fine, but you never know … so I woke him up and of course he was annoyed and sure enough, his blood pressure was stable at 134 over 74, perfectly normal. I backed off and skedaddled out of there as quickly as possible.

My nurse pumps up my arm again. The room is hot and I break into a sweat. Then a fuse blows. “That’s it!” I yell. “Stop! You don’t know what you’re doing!”

“Your pressure is 118 over 68. Very good.”

Oh, I guess she managed to get it to work.

“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
.