Opening My Heart (29 page)

On an impulse, I said to her, “I get the feeling you’d prefer to be the one giving Trevor’s care.” As soon as I said that, I regretted
it because it sounded disingenuous, as if I was challenging her to see if she could do a better job, but I didn’t mean it that way. I really wanted to find out if she would like to participate in her husband’s care because, if so, we could make that possible. But she looked alarmed and immediately backed right off. Maybe she realized she did need us after all. Perhaps she was just too tired to argue with me. She looked absolutely exhausted.

If there’s one thing I’ve learned after all these years it’s that caregivers have to take exquisite care of themselves. They can go all out, full-tilt, running on empty for just so long. It’s impossible to sustain the arduous work of caregiving over the long haul if you aren’t taking excellent care of yourself.

If Francine wanted to do some of Trevor’s hands-on care, it could be arranged. These skills are easy to learn; they aren’t rocket science – though the knowledge and judgment required to do them properly is. Millions of caregivers are doing these things for family members in their own homes. There are many positive ways patients’ families can get involved. Take Mrs. Delgado, instance, whose husband, Carlos, was in the
ICU
on a ventilator for almost a year. She wanted to be involved in his care, so we taught her to bathe him in bed, care for his skin, shave him, change his sheets, and suction his mouth. She caught on quickly and it pleased her to do these things.

“I love this man,” Mrs. Delgado said to me as she was combing his hair one day. Nothing about his intimate care bothered her.

“Don’t think we’re going to share our salary with you,” a nurse teased her.

Francine loved her husband every bit as much, but she couldn’t bring herself to touch his deteriorating body. She showed her love by directing his care and by being his protector, but since she couldn’t shield him from his illness, she tried to protect him from
us. What she didn’t realize was in order to be his saviour she didn’t have to make us into villains.

“You’re doing a good job,” she said to me one day, suddenly conciliatory. “Well, the best you can … you see, I’ve had bad experiences. You are a good nurse, Tilda, and there are some other good ones, like Anthea, Kwai, Danielle, and Erin – they are wonderful nurses – but then there are
others
 …” She gave a shudder. “I won’t name names.”

I’ve always advised young nurses not to take what patients say personally.
It’s not about you
. Families want to retain control or they need someone to blame and it’s often the nurse. They take out their anger and frustrations on nurses or doctors. They blame the hospital or the health care system for what’s really bothering them – the fact that they’re loved one is sick and has to be in the hospital at all.

I was not offended by Francine’s criticisms, nor affected by her corrections, nor bothered by her close scrutiny, but what I did find frustrating and stressful was doing everything in my power to win her trust and making no headway whatsoever. She had made up her mind not to work with us and nothing would convince her otherwise.

“We are all trying so hard to care for Trevor and with you questioning everything we do, watching us every minute, and constantly finding fault, it makes it difficult …” I said.

“But I am the expert on him.” She pointed at her husband. “I know what’s best. He belongs to me.”

She had a point. “This is true,” I demurred.

As much as anyone belongs to anyone
.

We do tend to take over, wresting control away from families. We find it difficult to do our work when patients challenge us or question our decisions, even though they have every right to do so.
We say we want partnership and family involvement, but we keep it strictly on our terms, by our rules. You can sit and watch. You may visit when we say so, but look, don’t touch – and don’t stay too long! Our authoritarian attitude is born out of concerns for liability, safety, and a long-held belief that we’re the experts. But these days, patients are so well informed about their bodies, their health, and medical science, including all the latest research and what tests and treatments are available, that in some situations, it’s debatable who knows best. More and more, patients want to be involved. Ideally, it would be as allies and partners, not as opponents or competitors, which is sometimes the case.

“I love him,” Francine said, then admitted, “I know I’m a control freak, but it’s how I cope. I need to know every detail and I need to see it with my own eyes.”

Perhaps this is what Dr. Aberman meant that day when he was questioning me about my patient. You need to see it to believe it. If you don’t do it yourself, how do you know it’s been done correctly? But, I would answer him now that as ephemeral and unmeasurable as it is, “good faith,” on all sides, is also required.

Francine continued to explain herself to me. “If I don’t make sure that everything is being done, I won’t be able to live with myself afterward. I need to have resolution.”

In a family meeting held that day, it was suggested by one of the staff physicians to Francine that it was time to revisit the plan in place should Trevor go into cardiac arrest. At that point he was still a “full code.” He explained to her that in the event of a cardiac cardiac arrest, resuscitation efforts would not be successful, but still, she would not agree to a “Do Not Resuscitate” order. One bold nurse spoke up in the meeting and spelled out for her exactly what a “full code” actually entailed – and didn’t spare her the brutal details. Step by step she described the pounding on the chest
required and its potential for accidentally cracking ribs, the electrical shocks applied to try to jolt the heart back into a rhythm, and the powerful medications given. The physicians reiterated the impossibility of success in Trevor’s case.

“You’re all ganging up on me, trying to frighten me. These are scare tactics. You’re bullying me!” Francine was fierce and looked horrified. She was furious at us for giving her this bad news.

Despite this frank and honest presentation of the facts, Francine believed otherwise and insisted her husband remain a full code.

“Is this what Trevor would want?” the staff physician asked her.

“There is absolutely no doubt in my mind,” she answered.

And so we continued.

Meanwhile, the nursing staff was grumbling. The younger nurses felt intimidated, some ending their shifts in tears and hurt feelings at Francine’s undermining of them. A number of the older ones were outraged at being bossed around and felt affronted by her criticisms. It was the main topic of conversation in the staff lounge.

“She should know better. She’s a nurse herself,” someone said and we all agreed with that.

“If it were my husband, I’d be busy sucking up to his nurses, not making it more difficult for them,” someone else commented.

“Funny how she thinks threats and intimidations will get her better care, but it only makes us try to avoid her. Why doesn’t she realize that if she works with us, it’s better for him?”

The doctors saw how hard it was for the nurses.

“I don’t get it,” one medical resident said. “Who gives nurses a hard time? Don’t people realize their loved one’s life is in your hands?”

“In England we would never go this far,” a visiting critical care fellow said. “We don’t offer treatments that have no benefit. What
a waste of money! It astounds me that here, you let families call the shots – they’re too emotional and don’t know enough about medicine to make these decisions. Maybe the reason you do it is because it’s for free?”

No, not free, but sometimes it feels that way. Cost never comes up in these discussions, at least not at the bedside, as it pertains to an individual patient’s treatment. I have never witnessed bedside rationing in the
ICU
where I work. So, why
do
we go to such lengths to continue to offer treatments that we believe are of no benefit to patients? I think we do it because we hate to dash a family’s hope, however misguided. We do it in the pursuit of attaining consensus and trust. We do it in an attempt to bridge the gap between the family’s beliefs and the doctors’ prognosis, which often is at odds. Most of all, it is an expression of our dedication to “patient-centred” care. And yes, there may also be times when it is done to avoid confrontation – even litigation – from a contentious family member.

For nurses, it is not an option to be a “conscientious objector” and refuse to care for a patient because the situation makes you uncomfortable or you disagree with their choices. Even so, some nurses put up considerable resistance, even calling in ahead of time before the start of their shift to plead not to be assigned to her – “I mean, to him” – they corrected themselves. The truth was that we spent much more time caring for Francine, helping her manage her anxiety, providing her with reassurance, explanations, and emotional support, than we did caring for her husband.

By now Trevor was deeply unconscious and every organ in his body was shutting down. Even with dialysis, his fluid volumes, electrolytes, and acid-base balance could not be normalized. His body was bloated beyond recognition and oozing all over with
horrible-smelling fluid. His skin was breaking down and in some areas had turned black.

I felt differently than the others. I called in ahead of time to specifically ask to be assigned to their care.
This is the patient I need
. Don’t think I’m such an angel: I did it because of something I heard at a funeral years ago. In his eulogy, the rabbi said that the deceased was someone who had devoted herself to her family and community. “She was a woman who had conquered herself so that she could serve others.” From that moment on, my own personal “mission statement” became clear to me – to achieve that degree of self-mastery so that I could become the nurse I aspired to be. I’ve had my work cut out for me and I’m not there yet. So, I continue to seek challenges like this in the hopes of becoming a better nurse, which is also my way of becoming a better person.

I was Trevor and Francine’s nurse for two more twelve-hour shifts and got to know her very well and him, through her. Early one morning, a mere three days after that last family meeting to discuss Trevor’s code status, I walked in to find Francine sitting beside Trevor’s bed, reading a book about miracles. She seemed pleased to see me and to know I would be his nurse that day. “I’m not religious,” she said, as if excusing or apologizing for such an unscientific book, “but I am spiritual.”

People often say this – I say it myself. For me it’s come to mean that I am open to trying various self-help strategies and borrowing wisdom from a smorgasbord of religions and philosophies while consciously avoiding what’s difficult or inconvenient, like ritual, practice, and prayer – the
clap-trappings
, as Janet comically calls them. I’m an eclectic “all-theist.” But I think Francine meant simply that she believed in a Higher Power but didn’t belong to a particular faith.

“I can’t let him go,” she added, which was the truest thing of all.

Later that day, when the end was near, Francine shifted into higher gear, shouting orders at me and all the others who came to the room to help when they heard the commotion.

“Speed up the drips!” she shrieked.

There were ten
IV
pumps delivering powerful medications at high rates.

“Nine-nine-nine it!” she shouted, using our private jargon to describe how we max out
IV
drugs on our pumps that fall 1 cc short of delivering 1,000 cc per hour.

Despite these measures, Trevor’s blood pressure and heart rate continued to fall.

“Give albumin!” Francine said, referring to liquid plasma protein that draws fluid that has seeped into swollen tissues back into the circulation and in some situations may temporarily improve a patient’s low blood pressure. So, at her request, we did order a unit of albumin and gave it, knowing it would not lengthen Trevor’s life, nor add a bit of comfort or dignity, but in the hopes that it might give a dose of peace to Francine.

I doubted it. I didn’t believe Francine would ever have peace.

When Trevor’s heart went asystolic – “flatline” – and we did not do any further attempts to resuscitate him, Francine seemed to unhappily accept this.

Despite her testy personality and all that we went through together, I became fond of Francine. But, as in most cases, there was no reason to stay in touch after she packed up her husband’s things and left the
ICU
where she had spent so much time with us over those few but long and gruelling weeks. Our relationship had ended, as it usually does with our patients once they go out the door, one way or another.

What brings peace? I often wonder. For me going through my surgery, I had to first know exactly what I’m up against, all the risks,
yet choose to fight the good fight, and then let go, surrender to the outcome. As for trust, it has always been my natural state and where I like to stay. When I stray or falter, I do everything I can to find a way back to trust. I have to trust.

Maybe what has to happen is this: patients have to be more trusting and we caregivers have to do more to be worthy of that trust.

In the afternoon, I play hooky from another cardiac education class even though I know I should learn about lifestyle changes, a healthier diet, and daily exercise. I’ve come to the realization that if I don’t change my ways, I am headed for the dreaded “metabolic syndrome” – a precursor to diabetes, coronary artery disease, stroke, and cancer.

Finally I take a shower, all by myself. Pretty pleased with my accomplishment, I take another stroll around the nursing station and stop to chat.

“Look at you!” the nurses exclaim. “You clean up nice.”

Then we hear it: “Code Blue … Code Blue.” Everyone at the nursing station tenses up and leans forward, listening for the location within the hospital. Was the crisis happening on one of the medical wards, or in the food court near the burger joint, or possibly out in the parking lot? I retreated to my room.