Opening My Heart (28 page)

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.

Back 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.)

Francine was intelligent and well educated and in arguments that were a matter of opinion, we often let hers prevail, as in the case when the infectious disease specialists tweaked Trevor’s antibiotics and she disagreed with their plan. In one instance, we followed her wish because it caused no harm to the patient and it made her happy. However, the main area of contention was with regard to sedation and pain medication. Francine insisted that those medications be kept to an absolute minimum.

“You’re snowing him,” she said accusingly. “The sedation drops his blood pressure and then you have to go up on the Levophed. He won’t be awake enough to know I’m here.”

This was a situation where we felt like we were treating the family, not the patient, until we were sharply reminded by Dr. Neil Lazar, the medical director of our
ICU
, that our priority is first and foremost the patient’s needs; our goal is always to give
patient
-centred care. Of course we want to be attentive to families, too, but the patient must come first. Trevor was clearly in discomfort from the ventilator, immobility, and many other reasons. He was restless, pulling at his tubes and
IVS
, thrashing in bed. Francine would smooth out his furrowed brow with her fingertips as if to forcibly erase his discomfort. With this clear clinical evidence of the patient’s discomfort, despite his wife’s objections, we continued to administer sedation and pain relief as necessary. “The patient will not be allowed to suffer unnecessarily,” Dr. Lazar told her unequivocally.

Francine started off every day by drawing back the covers to examine Trevor’s body. She took photographs and made notes on the various sores on Trevor’s body, the areas of swelling, oozing, bleeding, bruising, and leakage that end-stage liver disease and multisystem organ failure cause. “You’re not turning him enough,” she often complained. “His skin is breaking down.”

Our practice did not change because of her comments. Like clockwork, we turned him and repositioned his body, every two to three hours, as we’d been doing all along, as we did for all immobilized patients. We rubbed his skin and dressed his wounds. Every day, Vince, our
ICU
physiotherapist, put Trevor’s limbs through “range of motion” exercises since he wasn’t able to move them himself.

Francine watched us with a perpetual scowl on her face, correcting us along the way.