Opening My Heart (39 page)

As gently as possible, I say, “You will see lots of machines, flashing lights, and noises … it’s scary, but it will get easier each time you come to visit.”

Once in the room, her three sisters swarm her bed. Her husband and elderly parents retreat to the sides, to let them have their turn to be closest to her right now.

“Why can’t she have a sip of water?” one sister demands. “You see how thirsty she is!”

Suzanne grabs my arm and mouths, “Water.” Seeing her thirst, my own mouth feels dry, too. I lick my lips and swab hers with a moist washcloth. Her husband unpacks her bag – toiletries, a pair of furry slippers, and a photograph that he places face down – on the top of her bedside table. He tells me about their two young daughters at home, being cared for by his mother. Suzanne was diagnosed with pulmonary hypertension a few months ago, he says. She’s been at home on oxygen and an
IV
medication called Flolan but has deteriorated over the past few weeks.

The sisters recede to let the parents move closer. They tuck in the covers over their daughter’s restless body and smooth them out, probably as they did when she was a child, before bed.
What can we do to help?
their eyes beseech. Her sisters tell me that Suzanne is a mother of two young girls. She’s a lawyer, a marathon runner. Yes,
she was a smoker, once, a long time ago but stopped ten years ago. She takes excellent care of herself and was always healthy, until this.

“That’s in her favour,” the
ICU
resident says to them encouragingly, loud enough for the patient to hear, too. “Right now, Suzanne needs antibiotics for her pneumonia and support for her breathing with a ventilator. She can’t hold out much longer.” I can feel him striving to find that balance of reality and optimism. “It’s serious,” he says. “A transplant is her only hope.”

She’s worsening by the moment, before our eyes. Her respiratory rate is fifty to sixty breaths per minute. Her blood pressure is skyrocketing and her pulmonary artery pressures are nearing the triple digits – the highest I’ve ever seen. She will tire soon – arrest and die if we don’t do something. She may die anyway, but this is her only chance at life.

She begs for ice chips and winces from time to time.

“Are you in pain?” I ask. She shakes her head, no. There are drugs for physical pain, but for mental anguish – not so much. “Do you have any questions?”

No. No pain, no questions, just fear. Overwhelming fear.

We have to rule out a blood clot, a pulmonary embolus, or fluid around her lungs. It’s risky, but we “go travelling” (nurse speak) down to the
CT
scanner room. But she can’t tolerate lying flat long enough to do the
CT
, so we return to the
ICU
without the results of the scan. I start a heparin drip, in case there is a blood clot, and titrate the infusion to keep her blood the proper viscosity. Gary, the technician, arrives to do an echocardiogram at the bedside. She is restless. It’s getting harder for her to breathe. She’s tiring.

“I had an echo myself recently,” I say to distract her. Her eyes widen. Out of the corner of my eye, I see the family listening to every word I say, trying to read me.
Will I be good for their loved one? Will I take as good care of her as they would, if they could?

“I was a patient, too, and I was scared just like you.”

Her eyes widen. The family move closer. They urge her to stay focused, to keep fighting. “You have to try, Suzanne! Be strong!” They are protective of her and wary of me. They want what every family wants: the nurse to work as hard as they would to save their loved one. They’re checking me out to see if I know what I’m doing. Am I the nurse who will make things better? “Please, Suzanne, let them put the tube in,” they implore her. They grab on to her knees, clasp her hands, smooth her forehead.

She looks at their expectant faces; she can’t let them down but doesn’t answer.

The
ICU
team arrives and I join them outside the door to discuss the situation. It makes no sense, someone says. The patient says she wants to live, but she’s refusing intubation. She knows she can’t have ice chips but keeps asking for them. If she’s not mentally competent to make decisions for herself, we are going to have to let the family decide.

Have you never wanted to lose weight but gone off your diet? I want to ask that young resident. Have you never struggled with temptation or fought the seduction of despair? Have you never experienced confusion, ambivalence, or inner conflict?

It may sound strange, but contradictions often make more sense to me than logic.

“She’s thinking it over,” I say, “trying to come to her own decision.”

Back in the room, I increase the rate of the Flolan drip. I check lab results and accordingly adjust the heparin infusion. I swab Suzanne’s cracked lips, measure her urine output (low, this hour), keep an eye on her blood pressure, heart rate, and rhythm, and note that her “sats” have dropped into the low eighties. She tries to sleep, but breathing is too demanding for her to be able to rest.
I can’t give her sedation to help her sleep because it will slow down her respiratory rate.

Ignoring the messy room, meds drawn up but not yet given, incomplete computer work, charting undone, supplies that need restocking, I pull up a chair and sit down beside her. With only my body and my eyes, without a word, I send her the message,
How can I help you?
I keep quiet.
The less said, the better
.

“What should I do?” she asks, her eyes searching mine for the answer.

“What are you afraid of?” I ask.

“I don’t … know.” She gives a helpless shrug. “I’m … scared to death of the tube. That’s the … worst, isn’t it? What if I can’t get off it?”

I nod.
I worried about that, too
. “Being on a ventilator can be scary.”

“I can’t deal with that. I’m … so scared … Ice … please …”

“I understand.”
More than you know
. I slip a few chips onto her tongue, at this point her desire for them outweighing the risk of aspiration.

She closes her eyes, savouring the slivers of cold. I vicariously enjoy her enjoyment. I’ve never learned to make a complete separation with my patients, probably never will at this point in my career. I open my heart to her suffering and stay sitting with her, trying to feel, for a few moments, what she’s feeling. Perhaps briefly it lessens her burden to share it with another person? Then I decide to do what no textbook, professor, or policy manual would advise. Most will tell you straight out – don’t do this.

“I was a patient myself,” I start off and then tell her how scared I was and all that I went through. And that I really do understand what she is going through.

Am I crossing a line by speaking so personally? Probably. It’s not
harmful, illegal, or unethical, but it’s
unprofessional. To hell with that. This is war!

“Before my surgery, I felt just like you do, but I decided to let go and trust the people taking care of me. They kept me comfortable and safe and I promise you the same, whatever choice you make.”
I am here to serve you
. Face to face, we speak, heart to heart, just two women – wives, mothers, daughters, doing what it takes to survive. Both on the same side.

Speaking has become too much of an effort, so she motions to write a note. I prop up a clipboard, hand her a pencil, and await the discovery of her thoughts. Words on paper bear a different significance than spoken into the air or produced as digital markings on a computer screen.

I could comfort, explain, soothe, or elaborate but stop myself. I could pull away and get busy; it’s tempting to do so. I need to organize my medications, get my charting done. Get up, walk away. Instead, I sit still why she ponders these fateful decisions.

“Patient-centred care” is not as easy as it looks.

Keep a distance
, they told us in school – we tell one another – but no one can explain how to do that exactly.
Don’t get too personal
. Offer
empathy
, not
sympathy
, they advised, but who among us has mastered the ability to calibrate our emotions with a tweak of vocabulary? In order to understand another person you have to open your heart as wide as on an operating table. We have to be so attuned to patients that we are able to offer what
they
need, not
what we want to give. Most ordinary people aspire to The Golden Rule to treat others as we wish to be treated, but more is expected of caregivers who must treat others as
they
wish to be treated. Perhaps it’s The Diamond Rule – just as durable and shiny but not so reflective that you only see yourself in its sheen. Suzanne scrawls me a note:

After she writes each note, she motions for me to get rid of it so her family won’t see. After tossing the last one in the garbage pail, I go over to the bedside table and on instinct pick up the photograph her husband brought – it’s a picture of her daughters – and bring it over to show it to her.
Here’s what we’re talking about. These are the stakes. Have you had enough and want to start saying goodbye or do you want to keep on fighting?
I reserve all judgment; I am here to help you achieve your wishes.

For her, this is an existential battle; for us, her answer will be the blueprint of our care.

Perhaps out of sheer exhaustion, the family’s pleading, the reminder of that photograph, or the force of her innate will to survive, Suzanne nods and whispers, “Yes.” We intubate her and at last, well sedated, she looks comfortable. There is surrender, and with it peace, in her now-relaxed body. Her family goes home to rest. Soon, a team will arrive to put the artificial lung in place. It will buy her time and, if the stars are aligned in her favour, an unknown family’s magnanimity at a time of tragedy will bring new lungs to give her a chance at life.

“In the meanwhile, you are in good hands here,” I whisper to her.

Your destination is unknown, but we can guarantee you a safe journey.

Toward the end of my shift, I run down to the Cardiovascular
ICU
to find my nurses, the ones who took care of me. Joy is on and I ask her the question that continues to bedevil me.

“How do you do it?”

Joy thinks for a few moments, keeping her eyes on her patient in the bed a few steps away. When she finally speaks, it is as if she’s receiving cues emanating from that person. “I never allow myself to forget that a person’s life is in my hands,” she says slowly, visibly thinking this through as she speaks. “The surgeon has repaired the heart, and now it’s up to me to take it from here. I could never forgive myself if I harmed someone in any way. I always take it seriously and try to do the right thing. I never allow myself to forget that this is someone’s loved one. If I imagine how it is for the patient, I know how to care for that person”

There’s Maria coming on now, arriving for night shift. She greets me warmly.

“May I give you a hug?” she asks me in her respectful, slightly formal way.

Of course
. She puts her arms around me. It was into these very arms that I was delivered when I was in life-threatening danger; she brought me back from the brink. “She watched you like a hawk,” Robyn had said. Yes, Maria was the eagle at my back. One of them.

What makes a great nurse? It takes more than knowledge or skill and it’s not enough to be
caring
in the sentimental sense of the word. I think of Maria and other nurses like her. Do they love nursing? They probably wouldn’t express it like that. Some would laugh off that word; it might make them uncomfortable – but to be a great nurse takes intelligence, energy, imagination, integrity, and at the risk of sounding unscientific and
unprofessional
, I’ve come to the
conclusion that an additional element is required: love. How could you do this work otherwise?

Love is a lot to ask, but there’s no way around it.

You have to add love to the mix.

Stir. Shake. Serve.