by Tilda Shalof
“But if they are anxious or negative or worried, it affects me.” I see his skeptical expression. “I’m talking on a molecular level,” I insist. He shakes his head. None of this makes any sense to him and only seems like I’m being difficult and ungrateful. As always, he’s maddeningly sensible, but I’m the one in charge and I’m doing this my way! For now, I’ve put the kibosh on pity parties, fear fests, and worry warts. I’m in survival mode and have decided that what I need is to be around people who are strong, who believe I can do this, who will let me express my fears, listen, but then bolster me up. I want to be around only those with a healing, hopeful outlook. That description sounds like nurses. It’s time to tell them.
One thing that is strange and troublesome is that Robyn hasn’t called back since that phone call over a week ago. It’s so unlike her to avoid or ignore me. I waver between curious and furious. Maybe she didn’t hear me correctly? Is it possible she doesn’t get it?
There’s something else I have to do before my surgery. It was Monday when I saw Dr. David, it’s now Wednesday and I could be called for surgery any day. There’s not enough time to consult with a lawyer so I sit down to document my wishes about my care in my own words. It’s not an easy thing to do. No wonder most people don’t do this. How to cover all exigencies and leave no ambiguity? I’ve heard families argue over the meaning of words such as reasonable or chance or recovery. As one family member put it, “Even a 1 per cent chance is better than 0 per cent. I am holding out for that miracle.” Ultimately, whatever I write or say, it will be up for interpretation by the people caring for me, most importantly Ivan, who will be the one to speak on my behalf if I am unable to do so. There’s just one problem with that and it has to do with a dog.
Twenty years ago, just before we got married, we adopted a puppy from an animal shelter. A black and white terrier-poodle mix – so cute. The other dogs were barking madly and he was quiet. We named him Rambo, enjoying the joke of such a fierce name for such a docile puppy. Soon after we got him home, Rambo found his voice. He barked at his shadow, his reflection in the mirror, at the ringing of the telephone, and, of course, at the person who delivered the mail. (Question: Why do dogs bark at the mail carrier? Answer: Because it works.)
Rambo barked for eighteen years. (We didn’t have the Dog Whisperer back then.) He lived well and had a voracious appetite for all the things dogs aren’t supposed to eat, like chocolate bars (Kit Kats, especially) pointy, brittle chicken bones, and gristle and fat scraped from our plates. He loved beef stew but picked out the mushrooms and made a pile of them on the side of his bowl. “I don’t know what you’re feeding him,” the veterinarian said, “but keep it up.”
Rambo was a dog’s dog; indifferent to our affection, he enjoyed only the company of other dogs. Whenever the front door opened, he’d make a mad dash for freedom, as if busting out of jail. He was always fleeing our home for refuge elsewhere, once at the local high school a few blocks away.
At fifteen he began to slow down. (Afterall, he was really 105 dog-years old!) At night he would fall down the stairs. Lying in bed, Ivan and I listened to him, bump, bump, bump.
“He’s blind,” Ivan said. “He can’t see the stairs. We should take him to the vet.”
Why? To be fitted for glasses? How would he read the eye chart?
At sixteen, Rambo went deaf, but it didn’t make a difference to us since he never came when he was called anyway. He was the Helen Keller of dogs, blind and deaf, brave and stalwart – though not mute.
At seventeen, tumours sprouted on his legs, back, tail, and penis. He limped and hobbled, his back legs gave out. Yet he kept trying to drag himself to the door, to make a bid for freedom whenever possible.
At eighteen, he was incontinent – all over the house – but Ivan felt it would be undignified for him to wear a diaper. Rambo slept all the time, waking up only for his food. “See, he still has an appetite,” Ivan said, not the least bit concerned that he threw up all his food after each meal. Ivan loved Rambo completely and unconditionally, and that was that. To Ivan, love means never stopping love or giving up.
This is what families say. They can’t let go because of love.
I hope no one loves me this much, ICU nurses often say to one another.
I loved Rambo, too, perhaps not as much or as well, but in a way that allowed me to let him go. When the time came and he was drawing his last breaths, Ivan laid Rambo on a cushion and brought him to me. “Goodbye, Rambo,” I said, patting his furry head (Rambo’s, not Ivan’s).
We didn’t put Rambo on life support, nor did we resuscitate him (though if he’d gone into cardiac arrest I’m sure Ivan wouldn’t have hesitated to perform “mouth to snout”), but we didn’t do anything to ease his discomfort either. The point is, I don’t want to linger like this if I become incapacitated like that, out of control of my body, or in obvious pain. Please, do the kindest thing and ease my suffering! Can I count on Ivan to represent my wishes?
If I’m on prolonged life support and it’s not looking good, my family will be asked to consider what was important to me. “What was Tilda like?” they will be asked. “What were her goals and values?”
There are certain phrases families always say about their loved one when they’re considering what steps to take in their care, and my family will probably say something similar about me, too. One is, “Oh, Tilda – she loved life.”
Yes, I do, but on my own terms. I do love life, but not at any cost, not without condition. I love life, but I’m not prepared to compromise. I want to live, not merely exist. I don’t want to live if I can’t take care of myself and my family, if I have to be taken care of by others. Yes, I believe in the sanctity of life, but even more, I believe in the meaning of life – according to my definition of it, for me. If I lose my mind or my independence, let me go!
The other thing families say and mine will likely say, too: “That Tilda, what a fighter!”
“Tilda never gave up. She wasn’t a quitter.”
Oh, yes I did, yes I was. I don’t take on futile battles or ones that I don’t believe in. And I don’t want to be kept alive only to exist or to be a burden on my family.
Many nurses feel as I do. Maybe it’s because we see our patients’ suffering up close and personal. We are the closest witnesses to exactly what they go through. We feel tormented when we prolong and increase that suffering by engaging in futile treatments. We definitely don’t want that for ourselves. The irony here being that most nurses say they would refuse many of the very treatments that our patients are receiving. I have heard so many nurses express these sentiments that it would be interesting to conduct a survey of nurses’ own end-of-life wishes and compare them with a control group drawn from the public. I have my hypothesis of the results; what’s yours?
There are other matters we should all consider – not just those of us facing major surgery – such as organ donation. I need to sign a consent form, but more importantly I must tell Ivan my wishes. Families can override patients’ documented decisions. They get to decide because once you’re dead, you don’t own anything, much less your body.
Power of attorney can be for finances and/or for carrying out wishes about care and treatment, which reminds me of my father’s fondness for an old Jack Benny joke about a robbery. (Warning: You may only find his joke funny if you’re approaching fifty or about to undergo major surgery.)
A guy is walking home at night and hears footsteps behind him. A voice says, “Don’t move. This is a stickup. Your money or your life.”
The guy pauses.
The robber repeats his threat. “Your money or your life, mister.”
“I’m thinking it over,” he finally replies.
So, here’s another research question I would like to investigate: How well do the hypothetical decisions of substitute decision-makers (SDMS) correlate with those of the patients who have appointed them? “In Scenario X, would the patient want to have a feeding tube?” or in “Scenario Y, woul
d the patient want to be intubated or prefer to have comfort measures only?” How well do the SDMS know the patients’ wishes? It’ll be a macabre twist on the old Newlywed Game, where spouses are tested on their knowledge of the other’s preferences. “Does she like candy or potato chips?” “What did you do on your first date?” “Who usually initiates sex?” Believe me, the results of my study would be every bit as fateful!
Next, I call the members of Laura’s Line and tell them, one by one. They promise to check up on me and visit me when I’m home. “Do you remember Rambo?” I ask Laura.
“Of course! How could I ever forget?” she says and immediately knows exactly why I ask. “Don’t worry, we won’t let Ivan ‘Rambo’ you. When he goes out to put coins in the parking meter, we’ll pull the plug on you.”
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.
