by Tilda Shalof
I return to reading the “informed consent” document. It demands a true understanding of all risks and benefits, but I often wonder if most patients get this. If they did, perhaps there might not be as much blame going around in hospitals as there often seems to be. “No one told me this could happen,” I’ve heard patients or their families say when complications happen or things go wrong. “Oh, maybe they told me, but I was too stressed and didn’t take it all in,” they admit. I pull a pen out of my purse to sign on the dotted line, but again I stop short. Recently, I took care of a thirty-one-year-old man who came in to the hospital to have a mitral valve replacement and had a massive cardiac arrest on the table. He was too ill to undergo the valve replacement and ended up needing a double lung and a heart transplant. From what I hear, he’s never completely recovered. He doesn’t grasp that he’s had a transplant, yet he knows he’s not at home with his family. I push his tragic story out of my mind – it’s so rare – and sign the documents.
Now seems like a good time to reprise my chorus, which is beginning to sound, even to me, like a broken record.
“I want you to know …” I start off strong, but my voice drops down low as if I’m about to say something forbidden. It feels that way but I continue on with my urgent message. “If something happens and … if I become irreversibly brain-damaged … or if it doesn’t look like I’m going to make it, please … don’t prolong my life endlessly on life support …”
Why does it feel so radical, so subversive even, to discuss death? I struggle for the right tone and the proper words to express these things yet, I should know how to do this! I’ve been thinking about it for years.
“That’s not going to happen,” he says curtly, making a dismissive gesture with his unbroken arm. “I’m going to fix your heart. You’re going to feel better than ever.”
I’ve insulted him! I didn’t mean to impugn his ability, but surely even he has lost patients before? Perhaps none died because of anything he did or didn’t do, but he knows what can happen. It’s obvious he doesn’t wish to entertain further discussion of this topic, so I drop it and we chat briefly about his work. He shares his frustration that his injury prevents him from operating. “There are so many more lives I could be saving.”
His gift weighs heavily on him. Does this guy ever take a vacation?
Susan, Dr. David’s secretary, comes over to tell me she’ll call me in few days to tell me if he can fit me in next week. If not, he will refer me to another surgeon. This situation reminds me of when I was a week overdue in my first pregnancy and my obstetrician wanted to induce labour because of my cardiac problem. I became suddenly superstitious, reluctant to tamper with fate. I couldn’t have the baby shower my friends wanted to throw for me until after the baby was born and I certainly couldn’t bring myself to book an appointment for the birth. What if I made the baby a Libra when he was supposed to be a Virgo? I don’t like to mess with the stars! My doctor wisely knew how to deal with my concern. “It’s already been decided,” he said with a glance heavenward, alleviating me of any earthly interference. I agreed to book my delivery date.
Dr. David accompanies me out to the waiting room and as I’m leaving he does something that catches me off guard. He puts out his hand and takes mine. Many surgeons refuse to shake hands to avoid picking up an infection or having someone crunch their bones, yet this gesture means so much to the person entrusting his or her life to you. (Once, I went to a lawyer who wouldn’t shake my hand because he knew I took care of HIV-positive patients. I never went back to him.) I appreciate this handshake. It seals the pact of trust. Now your problem becomes ours. We are partners and will face it together.
As I’m about to leave Dr. David’s office, as usual, my curiosity gets the better of me and I can’t resist one last question.
“Tell me. The Orthodox couple, how do they feel about a pig valve?”
He merely smiles at my question, but I know the answer. To an Orthodox jew, anything is permissible if it is to save a life – even something as unkosher as a pig.
Before heading home, I sit in the bustling lobby, sipping a cup of coffee, immersed in my thoughts. To some, it may seem overly dramatic and extreme to plan my “advance directives” about my end-of-life care. Certainly no one wants to have these difficult conversations, but the thing is, I have seen what happens if you don’t: it falls to your (mostly) well-meaning families to speak on your behalf. At best, they can only guess. They each know you through their own, personal perspectives. I have been at bedsides where warring factions stood on opposite sides of the patient, each pulling in their own direction, both sides claiming to know the person best. What I do when this happens is position myself as close as possible to the patient, or at the foot of the bed, trying to show with my body that I am not aligned with either side, only with the patient. Sometimes when there is so much conflict without resolution or where there is no family or “next of kin” – such sad words – to speak on behalf of the patient, a public guardian, a complete stranger who does not know the patient at all, intercedes to help make these crucial decisions about instituting, prolonging, or withdrawing treatment for a person by email, fax, or telephone.
The crux of the problem is that we don’t know our ICU patients’ wishes. Most of them are far too ill to express themselves. I often look down at them, lying there unconscious, and search for signs that would reveal their wishes. I wish I could ask them, What do you have to say about what we are doing to you? Do you want this? Should we continue? Please tell us!
I can’t deny the long-held conviction that I have in far too many situations that if they were able to speak, many would refuse to have done to them what we are doing. I can almost imagine their voices:
Let me outta here.
Stop torturing me.
Please just keep me comfortable. Let me go in peace.
For years I had my own opinions but never let them affect my patient care. But it was causing me so much distress that I had to find a way to come to terms with these situations or I was going to have to leave the ICU. Eventually, I reached a turning point with the realization that my job is to carry out my patients’ wishes – if only we knew them! (I’ll do just about anything a patient wants, unless it’s harmful or illegal, but even that’s debatable. Have I ever given a cigarette to a patient dying of lung cancer? Of course I have! Isn’t this “patient-centred care”?)
I have worked with doctors whose views differ from my more liberal ones. One in particular vehemently opposed this interpretation of patient-centred care.
“I have to act according to my moral code,” he told me once. “I have to do what I believe is right for my patients as their physician.”
“Even if it differs from what they want?”
“Yes. I have studied long and hard to do what I am trained to do, and choosing life is always the right thing. There is no situation when I would not do everything I could to save a life.” He did not believe in ever discontinuing active treatment or withdrawing life support. “How could I deny every medication, dialysis, full resuscitation, or life support to a patient? That would be murder!”
“What if the patient told you they didn’t want any more?”
“It’s a symptom of depression or psychosis. I would call for a psych consult.”
“And if it was concluded that they were competent to make this decision?”
“Someone who is mentally competent would not want to die. It goes against everything I believe in as a doctor and I won’t offer it. They’ll have to find another doctor. Death is the enemy and we have to fight it with everything we’ve got.”
We left it at that. I am happy to disagree but wary of such certainty – of any position – especially when it comes to these matters. Sometimes, lack of resolution makes more sense to me than “answers” to these questions.
But I continually return to the question that obsesses me. What do our patients want? The few times they have documented their wishes, or have been able
to express their opinions to us themselves, are so singular that they stand out in my mind.
There was Mrs. Summer, a seventy-year-old woman who had been a patient in the ICU for almost a year. Chronically ill with a multitude of medical problems that affected every body system, she lived on a ventilator, dependent on it for every breath, and showing no signs of ever being able to wean off of it. Mrs. Summer was able to tell us that she did not want to continue living this way. She asked for treatment to be stopped and to be kept comfortable. Many days passed during which specialists of all kinds came to her bedside to determine if she was of sound mind and not merely temporarily discouraged. It was decided that she was indeed capable of making this fateful decision. When she was ready, quietly, slowly, surrounded by her family, life support was stopped and she was kept comfortable while she died. Sad? Strangely, I didn’t find it so. It is profoundly satisfying to help a patient achieve her or his goal to die in comfort and dignity.
Another occasion when we heard directly from the patient herself was not as peaceful. A patient with pulmonary hypertension, a serious lung condition, grabbed my arm and told us she wanted us to do everything to save her life. Even as she was gasping what turned out to be her last breaths, she made sure to tell me her wishes for the guardianship for her young daughter. A lawyer was on his way to document these directives, but I doubted he would make it in time so I sat beside her and wrote down everything she said verbatim. “Don’t let my sister adopt my child. She is evil. She’ll abuse her and make my daughter her slave.” She begged me to make sure that wouldn’t happen, but all I could promise was to record her wishes in her own words. I had no way of finding out what happened, but at least her wishes were documented.
A much more common scenario is that of an eighty-eight-year-old woman who is currently in the ICU in a vegetative coma after massive strokes and seizures. She is being kept alive on life support because once, many years ago, she and her husband visited a nursing home and she casually remarked in passing about the residents there: “Well, at least they are alive.” From that one-time, offhand statement, her husband has concluded that she wants to be kept alive on life support.
As for me, I have done due diligence, telling my doctors and most importantly I have spoken with my family doctor, Dr. Janet Morse. She knows my wishes. Now, before leaving the hospital, I have one last stop. I need to speak to one of the ICU experts. I want to be saved only if it is possible to do so and there are certain doctors I trust to know the difference: Dr. Laura Hawryluck is one of them. It takes experience, wisdom, and discernment, all of which she has in abundance. I’ve known “our” Dr. Laura for years. Friend and colleague, she’s brilliant, kind, and modest, not to mention incredibly chic with her stylish clothes and great vintage jewellery. When I catch her for a moment in the ICU, she’s busy but takes a moment to sit with me in the conference room, a big glassed-in area near the nursing station we called “the fishbowl.” It is a public place, but we’re alone for this conversation. She listens and nods and agrees to be available if I need her. She promises to check up on me in the ICU.
For years I’ve complained that people need to discuss these matters when they are well and able to consider them rationally, but it’s no wonder that most people don’t. It’s taken open-heart surgery to make me face them myself.
It’s time to go home. I look at my watch. I’d been at the hospital most of the afternoon, more than an hour in Dr. David’s office alone. Every patient wants – and deserves – generous time with their doctor. If it means waiting for our turn, so be it. From what I’ve seen and know of him, he treats every patient with the same unrushed attention. And he didn’t notice my lacy black blouse or hip jean jacket, nor did he actually examine me. He’s only interested in the heart he can see and touch, the first-hand heart, not second-hand on a computer screen or listening to it at the far end of a stethoscope. Why read a translation of a book written in your native language? Why kiss the bride through the veil? my father would say. When my heart is in Dr. David’s hands, he’ll know what to do.
All I have to do is show up and he will fix it.
7
HOW TELLING
It’s time to tell my children and the rest of my family and friends. I guess I needed to think it through first and come to terms with it by myself. My family is small – just my brothers and their wives – but we have a wide circle of friends. Vanessa makes it easy for me, showing only concern without a speck of begrudging that my heart defect is fixable and Steven’s wasn’t. I beg her not to tell her kids to whom I’m very close, but she scoffs at that idea.
“Of course I’ll tell them. I don’t like secrets,” she says.
With my friend Joy, there are some minor grievances lingering between us over long-forgotten matters, but now with this, we are reminded of what’s really important, and we let them go.
“I’ll visit you in the ICU,” she says.
“I’d rather you come afterward, when I’m at home,” I tell her. I’m not sure yet how I feel about people visiting me in the ICU.
I called Robyn, a few days ago. Friends since we were ten, at school, Robyn was the pretty and popular one and I was, well, not, but that’s never mattered. In her family, there are six daughters and I swell with pride when her parents, Dr. Bob and Norah Sheppard, refer to me as their seventh. They “adopted” me during my miserable adolescence when I wanted a different family than the one I had. After all these years, Robyn is every bit as beautiful, with her completely natural, unmade-up looks. Even though we live far apart (she’s in British Columbia) and don’t see each other much, we know every detail of each other’s lives and couldn’t be closer or more in tune with one another.
“Remember that day when we were hiking on Pulpit Rock?” I started off, falsely upbeat and dispensing with greetings as we always do. She remembered it better than I did; what happened up there scared her more than me. When I said the words open-heart surgery, she gasped, but I continued on, explaining in clinical detail what’s involved, underplaying my fears. I could tell Robyn was baffled; she couldn’t read me. It was unlike me to be so unemotional, so preternaturally calm. But I’ve had time to get used to this idea and work toward this state of acceptance; she’s hearing the news for the first time. She probed deeper, wanting to know how I’m really feeling. “Is there something you’re not telling me, Til?”
“Only that anything could happen. I believe it’ll go well, but you never know …”
“Are you having a premonition?” Robyn’s in touch with the metaphysical.
“No,” I assured her and we fall silent for a few long minutes. Odd, but in our forty-year friendship, we’ve never been at a loss for words until now. I’m afraid she might cry, so I rush to get off the phone quickly. “We’ll talk soon,” I promised, thinking how love has a way of reminding you of all you stand to lose.
Now as I tell other friends, they react with surprise and concern. Since no one knew I had a heart problem, this comes completely out of the blue. It shocks them.
“How terrible! That’s so scary!” they say. Could this happen to me? I see them wondering. What are the symptoms? How do you know if you have this problem? We are all at the stage in life when it’s beginning to dawn on us that we won’t be around forever. Having kids reminds you of that and so does heart surgery. Their worry burdens me and makes me feel guilty for having caused it. I’m used to making things better for people, not worse. Some friends nervously regale me their own health problems and those of their relatives, or share their hospital horror stories. I reassure them of my good prognosis, and tell them a few medical jokes. I attempt to lighten up and change the subject, but it’s not easy now, with this news out there.
One friend asks if I’ve told our rabbi, but I don’t believe in turning to religion at a time of illness or crisis. It seems false to me. But I’m just as superstitious in my own way. I even have a phobia about prayers, thinking they’ll jinx me. For example, I never say, “Have a safe trip” or �
�Be well” because I can’t bear to think that a trip, or you, could be other than safe or well. On the other hand, it’s just something people say. It’s never been a stretch for me to believe in things unseen or unproven, and yes, I do believe in God and feel a desire to pray, but it seems undeserved and hypocritical to start now. Besides, if I was going to pray, I’d do it in out in nature somewhere, where I can feel the presence of God, not sitting in a noisy, crowded synagogue. How’s this, God? Can we cut a deal? If I make it, I will start going to synagogue – as well as every church, temple, and mosque. Yes, I’ll join any group that will accept me and that has good music.
Every since my angiogram three weeks ago, I’ve had a strong sense of taking charge of my patient journey. I have been preparing myself for this event like an athlete in training for the Olympics. I’m taking excellent care of myself, getting lots of rest, eating well, meditating, breathing, and reminding myself to smile, laugh, and be cheerful, especially in front of my kids. I carefully select the Internet information I expose myself to (nothing scary or upsetting) and am highly selective about the company I keep, allowing around me only those who are calm, balanced, and positive. The words people say and the energy they bring affect me as strongly as medications and I take care to titrate the dosages carefully, exactly like I would give a drug in the ICU, one that goes straight into the circulation.
“Stop trying to direct everything,” Ivan says. “You’ve become a control freak.”
“Some people make it harder for me. I don’t want them around me.”
“They don’t mean to. They only want to help. People have a right to react however they wish.”