Opening My Heart (19 page)

Laura knows how to cheer me up.

Frances knew Rambo, too. “Remember the day they called from school to say, ‘We have Rambo here, in the principal’s office?’ ”

Yes, they remember it all, even the mini euthanasia kit they prepared for me, though I never could bring myself to use it. (Hot shots – they wouldn’t have had the guts to do it either.)

It’s time to have this discussion with Ivan. In the
ICU
, when the family and the team gather to discuss a patient’s plan of treatment, it’s these conversations that become more meaningful and persuasive than any paperwork or legal documents. When we’re all standing at the patient’s bedsides, trying to figure out what to do, no one has ever pored over the clauses in a living will to find answers, but many families have been asked, “Did you ever have a talk with her about these matters?” or “What would he have wanted?” I want Ivan to be able to say, “You know what? Just before she went into surgery, we had a conversation and this is what she said …”

“Ivan,” I say when he gets home from work. “There’s something I have to tell you.”

“What?” he asks, tired and distracted.

Oh dear, it’s probably not the best time to talk about this, but I’m down to the wire here – my surgery will likely be next week
.

“If something happens to me during or after the surgery—”

“Oh, not this again,” he groans in exasperation, covering his eyes. “Do we have to go over this again?”

I guess I may have mentioned this topic before, but doesn’t it bear repeating now?

“Please listen to me. I need to say this.”

“Can’t you be more optimistic? You’re going to be just fine.”

“Probably, but just in case … if I don’t, you know, well, make it … What I mean is, that if my time is up, let me go in peace.”

“You are not going to die. Haven’t your doctors said you’re going to do well?”

“Anything’s possible. It’s major surgery.”

“We could all die, at any time. What’s your point?”

“That’s my point! You read the newspaper. You watch
TV
. You sell life insurance. You know what can happen. Everyone should have this conversation, not just before surgery. People write wills for their money and jewellery, but this is way more important. Everyone should be having this discussion with their loved ones. Maybe it should even be a law! We all have to prepare ourselves and each other.”

“Why don’t you prepare yourself by being more positive?”

Oh, the tyranny of the Positivity Police! “Look on the bright side,” they’re always saying. The “glass is half full” proponents. This is not the way I cope with life. I have to take my time to feel bad about what’s happening, then, knowing what I know, make a conscious choice to be positive.

“You’d have given up on Christopher Reeve and look at all he managed to accomplish, even as a quadraplegic.”

“But he was able to speak for himself and state what he wanted and he chose to live, even though he knew he would need around-the-clock nursing care. I’m not as brave as that. I respect that choice, but it’s not what I want for myself.”

“Why not? Isn’t it better to be alive than dead? To be here for your kids than not?”

“To me it isn’t, not if I can’t take care of them or, even worse, if they have to take care of me. Please let me go before it gets to that point – don’t you dare let me linger around like Rambo!”

“Is this about Rambo or you?” he asks in exasperation.

I see I’ve touched a nerve, so I keep it to my own situation. “You need to know my wishes so that you can speak on my behalf. Now you don’t have to worry about it because you know them.”

You should really be thanking me
.

In the evening, we take the kids out to a local sports bar restaurant for dinner and as we wait for our food to arrive, I figure it’s time to tell them. (Just yesterday, Harry asked again about a puppy. “Not now,” I’d said tersely without offering an explanation.) A
TV
set is suspended up above their heads, facing them. On the split-screen their eyes flit from a tennis match to a soccer game. At the same time, they’ve made the tabletop into a hockey rink, with the salt and pepper shakers as goal posts, forks for sticks, and a sugar packet as the puck. Since we more or less have their attention, it seems like a good time to tell them and Ivan starts it off.

“Mom has to go into the hospital. She is going to have surgery on her heart.”

Mom’s heart!
I suddenly realize what it means to them.

Max giggles nervously and looks to his older brother to see how to respond. At first, Harry seems intrigued by this news, then concerned. He’s a self-possessed, composed boy at fourteen who is not easy to read.

“Are you worried? Scared?” I ask gently, giving him multiple-choice options and suspect it’s “all of the above.”

No, he shakes his head and stares at me, unblinking. “I’m never afraid. In a movie, if something is scary, I laugh and then I’m not scared of it.”

It’s a humbling moment when your child is wiser than you.

But there is something he does want to know, a question I knew he would ask.

“Are you going to die?” His big brown eyes are wide and unflinching. I know he wants the truth.

“I don’t think so,” I say. “I am confident that it will go well. Many people have had this surgery and come out better than ever.” I tell them about the governor of California, the hockey player, and other celebrity heart valve patients. “But nothing is certain and there are always risks. No one knows for sure, but I feel positive.” They both deserve an answer they can live with no matter what the outcome. What if my last words turned out to be untrue? Everything I’ve said might be called into question.

Later, when we get home, they stay outside to play road hockey until it’s dark. I stand by the window watching them for a while. I think of all the reasons that I have to pull through this for them. I am the one who looks things up in the dictionary, meets with the teachers, buys all the fancy olives and exotic hot sauces, and what about my perfect pancakes? Do I have any last-minute wisdom to impart to them? Floss your teeth! Return library books on time! Make your beds! During other difficult times I’ve experienced in my life, whenever I made my bed, that small act started the day with a sense of order.

But even if all does go well, I will be in the hospital for at least four or five days and for the first time since they were born, I will be inaccessible, unreachable to them. Afterward, at home, it will
take weeks to recover. I can’t bear to think there will be days that I will be of no use to them.

I come in the house and consider other aspects of being a patient. I think of a letter we received in the
ICU
from a Muslim woman who was coming into the hospital to undergo an elective procedure. She knew she would have a stay in the
ICU
, so ahead of time she wrote down her wishes about the care she wanted to receive. She asked to be kept physically covered at all times, except for medical purposes, but then only the part of her body being worked upon was to be exposed. Her hair was to be kept covered at all times. If she was to receive nutrition, it should be strictly vegetarian. She asked that her prayer tapes be played for her with ear buds. She wanted no visitors and only her husband to be allowed to see her while she was unconscious. She requested to be cared for only by female nurses and never to be placed in the proximity of male patients. We were able to meet all of these requests, made so much easier because we knew them.

It is astonishing that we don’t receive more of such statements. It’s a huge problem when we don’t know what our patients want. They are not telling us.

It’s time to revisit my own views on visiting. As a nurse, I’ve always been flexible about visiting hours and policies. It’s been my way of practising my own brand of patient-centred care long before it became a hospital buzz-word or corporate philosophy. I’ve had conflicts with other staff and managers who’ve come down on me when I’ve allowed family members to visit freely. “We have to be consistent in enforcing the visiting polley,” they say. Two visitors at a time. Immediate family only. One person to be appointed spokesperson. No visitors during change of shift. Keep visits short. Overnight stays only if the patient is unstable or dying (sometimes hard to predict). Visitors are to call in first to get permission to enter.

Some of these points are for infection control. Others are for the privacy of other patients or to control noise. There’s a rationale behind for each one, but I can’t find it in me to dictate to others or to be an enforcer. We do not own our patients; we are not the boss of them. To my way of thinking, my patient is the person in the bed along with all the people who call in, come to visit, or care about that person. There have been many occasions when I’ve spent more time offering explanations and emotional support to families than to my unconscious patient. I find it hard to limit visitors or their visits and tend to put restrictions on them only when they are rude, abusive, combative, or disturbing the patient – which actually happens more frequently than you might imagine.

Some nurses are not as welcoming to visitors. Admittedly, it is challenging to be around the intense emotions and complicated dynamics that families bring to the bedside. It takes skill and maturity to be able to field the barrage of questions coming at you and at the same time be closely observed while you are doing your work.

There’s another reason for restricting visitors that is a sign of our times. The staff’s right to work in a secure environment and patients’ rights to privacy can be threatened when visiting policy is lax. In the
ICU
where I work, this is a hotly debated and contentious issue. Some of my colleagues have lobbied to have the
ICU
locked. They say they don’t feel safe, and families coming and going freely is a security risk. “We work at a downtown hospital in a big city,” they argue. “It’s only a matter of time before something terrible happens.” Indeed, over the years we have had angry families and, on rare occasions, hostile, threatening, and even violent ones. Many nurses say they feel vulnerable and unsafe. Recently, members of a street gang tried to surreptitiously whisk away the dead body of one of their members right from an
ICU
bed. The police
were called and the plan was foiled. Another family was so angry about the care their loved one received that they threatened the staff, stalked the nurses in the parking lot, and for months paraded outside the hospital, picketing with placards, naming the doctors and nurses they believe caused their father’s death, calling them “angels of death” and “murderers.” The nurses in favour of increased security measures also point to a recent tragic case of a nurse in another hospital who was gunned down and killed in the
OR
by her lover, an anesthesiologist she worked with. But can workplace violence be prevented by beefing up security measures? Couldn’t these freak occurrences of violence have happened anyway, and still can happen anywhere?

The issue of security for the
ICU
remains under debate. Personally, I have never felt unsafe at work, but I probably couldn’t work there if I did. I’m pretty “tough.” Once, I saw a stranger walking through the halls of the
ICU
eating a slice of pizza. He wasn’t a visitor and seemed like someone who had just wandered in off the street. “Who are you?” I asked him. He told me his name. “What are you doing here?” He grinned. “I’m eating pizza.” Bristling, I told him, “This is not a pizza-eating area!” and showed him the door. My friends cheered me on. “You go, girl!” A locked door or security system would not make me feel protected; it would make me more fearful. The only thing that makes me feel safe is to work toward creating a culture of trust where safety can grow. In a healthy public workplace, there is mutual trust between the people that work there and the people we serve. I have experienced it and know it is possible. The problem is, how to get there from here?

Another challenge is the necessity to balance patients’ need for quiet and rest with the comfort of being surrounded by familiar faces and voices. There are times when even a well-meaning visitor can be a disturbance. One patient’s wife assured me that she’d
be keeping an eye on her husband’s cardiac monitor and “if his heart rate goes up too much, I’ll leave,” she promised. Later, when she brought in other visitors, she let me know she was still on duty. “If his blood pressure goes over 150, I’ll get rid of ’em.” Funny thing was, his blood pressure shot up only when she came in! I assured her that we’d observe him together and if he showed signs of stress from too many visitors, I’d step in.

Seeing the patient means so much to families, especially in the
ICU
. (I’m not always sure of its benefit to patients, but I’ll get back to you on that.) It nearly broke my heart the day a mother thanked me for allowing her to sit at her son’s bedside for a long period. As I brought her a chair, she said, “The other nurses have kept me out all day. They made me feel like a nuisance.” I was not happy to hear that a parent had been denied access to her critically ill son, but I seriously doubted she’d been prevented from visiting for that long, though it’s possible. The point is, that’s how it felt to her.

To outsiders, it must seem arbitrary and capricious the way nurses enforce the rules. It shouldn’t be this way, but too often it can depend on a nurse’s mood, personality, ability to handle stress or communicate with families, or even the whim of the moment. Families resent us for it, too. Out there in the waiting room, they share impressions and rate us – the “good” ones versus the “bad, the “nice” versus the “mean” ones.

I guess we have a bad rep. Riding in the hospital elevator one evening, I heard two visitors grumbling about having been asked to leave at the end of visiting hours.

“So, I’m guessing that G for Ground Floor means ‘Get Out!’ ” one said as he pushed the button.

“Yeah, and L for Lobby really means ‘Leave Already!’ ”

“There should be an S for ‘Scram.’ ”

Do I detect a note of bitterness? There have been times when even I’ve been pushed to my limit and came down hard on visitors. There was one large, noisy family who walked in and out constantly, poking into other patients’ rooms, showing up and wandering in at all hours. I was in the midst of giving an enema to their elderly father when they parted the curtain and peeked in. “Is this a good time for a visit?”