Opening My Heart

by Tilda Shalof

  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, v
isibly 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.

  * Airway, breathing, circulation – the mnemonic mantra of CPR.

  Epilogue

  IN A HEARTBEAT

  It’s been two years now.

  We got a puppy. On purpose I didn’t choose a lapdog or a purse pooch. Toby is a big, high-energy border collie and shepherd mix who needs lots of exercise. Intuitively, I knew that by fulfilling his needs, I would be fulfilling mine. He and I walk miles of city streets, explore its green spaces, and hike rugged country trails. We run together, he alongside me, stopping now and again to look up and check on me. You can do it, he seems to say, egging me onward, stronger, faster, longer. And when I occasionally need a reminder to be grateful and enjoy each moment, he shows me how and reminds me of my life’s purpose.

  For years I lived my life, knowing it could be over in a heartbeat. My heart is fixed and healthy now, but I still live with that sense of urgency. This journey has brought me renewed health, a greater appreciation for each day, and the discovery that the set-points for age and weight may be constant, but it’s possible to raise your happiness set-point. I know I did.

  And yes, in retrospect, I guess I did have one of those sought-after “near-death” experiences. I went as close to the edge as you can go and made it back to tell the tale. I didn’t find out whether there’s life after death, only that there is life before death, and I want to live it to the fullest. Yes, I still lose my temper at times, sink into mindlessness, don’t meditate or exercise enough, and have a few pounds to lose, but when I get stressed out, my friends, family – and especially my children – keep me in check. Like the other day, I yelled at Max about his messy room – unmade bed, clothes on the floor, wads of used hockey tape, rotting apple cores, etcetera, etcetera. “This place is a pigsty!”

  “Well, you would know,” I thought I heard him mutter under his breath.

  “What did you say?”

  “Chill, Mom. It’s not open-heart surgery.”

  The kid’s got a point.

  And when I turned fifty and was feeling both joyful and a touch morose, Harry turned to me and said in his level-headed way, “You’ve lived half your life, Mom.”

  If I make it to one hundred in good health, what a gift that will be, but I am willing to forego fewer days in exchange for a natural, dignified end when my time comes.

  Ivan wanted to throw me a big birthday bash (not surprisingly, Ivan doesn’t do surprises), but what shindig could top open-heart surgery? I already got the best gift.

  And yes, I still worry a lot about the health care system, but I believe the vision of quality health care for all is possible. The problems are fixable with the resources we have. It is our expectations that have to be brought in line.

  I am lucky. I have no complaints about the health care I received, only praise. Many would claim that I feel that way because I received special treatment: I was an insider, was treated in a world-class hospital, had a brilliant surgeon, expert nurses, a posse of protectors, and a close circle of supportive friends and family. Nothing whatsoever can be concluded about the health care system based on my singular experience and I’m the first to admit I was fortunate – even privileged – but isn’t what I received what everyone deserves? It shouldn’t require fortune, luck, money, or connections to get what I got – not when it comes to health care. Why can’t everyone have great health care?

  This is what I still don’t understand: why can’t we make sure that every human being gets what they need, whether it’s open-heart surgery, cancer treatment, mental health care, HIV retroviral agents, pain relief, attention to an ear infection, and, of course, clean water, healthy food, and safety?