She had not been home in at least three days. She sat motionless, shoulders slumped, arms draped limply over her lap. I couldn’t tell if she had nodded off. The wrinkles of her clothes seemed to blend into the lines of her face, stuck in a soft, yet permanent frown. The red of her blouse appeared faint against her pallid skin, as if exhaustion had sapped everything it could from her being, and had moved on to the rest of the room. A thick stillness surrounded us as I stood there watching her, none of us speaking. When I looked at the clock, five minutes had passed. Finally, my attending broke the silence.
“So those are the options. How would you like to proceed?”
Her lips began to tense, the first sign that she had heard the news we had shared. I was relieved when she turned her head away from us. She blinked faster to fight the tears pooling on her eyelids.
“I think it is time to say goodbye.”
My eyes followed her fingers as she dragged them faintly over the wires and tubing that curled around the near lifeless arm. Henry’s arm. I shuddered, feeling for a moment just a little queasy. I had managed to forget that Henry had been lying next to us for the entirety of the conversation.
The clear tube taped to his cheek disappeared into his mouth, burrowing into the abyss like a garden snake. Henry hadn’t moved since I first started on the case. Hadn’t rolled over, hadn’t curled his toes, hadn’t so much as twitched a muscle. The train-like chug of the ventilator filled the room with its thick, rhythmic noise, sounding almost like a last breath being forced out over and over again. This is the only way I ever knew him.
I had spent more time with Henry in the past month than anyone else on the ward. I documented his every change — there weren’t many — and made it my duty to watch him diligently, being sure nothing was missed. Lucy sat with him most days, watching and waiting. Her children, Henry’s children, visited as well. They would speak animatedly, but I don’t speak Mandarin, so I could only guess about what. When she was alone with Henry, she didn’t try to speak with him.
I had been told his story, but it was a story in the third person. I only knew as much as Lucy would share. She tried to breathe life back into her husband by recounting his past. He was a dishwasher for a time, when they first arrived in the country, she said. She told me about his first day on the job — he had showed up in a suit and tie. She was proud of her husband, who had eventually managed to turn that suit and tie into his own pizza restaurant. Everywhere he went, everything he did, he was always overdressed. She smiled, looking up at the ceiling, clearly taking in a mental picture that existed only in her mind.
Everything I’d come to know about this man had been recounted and retold through the eyes of others — his wife, his doctors, his chart. Just as the brain fills in the gaps that the eye fails to see, I saw a character slowly come to life from the inked notes of doctors before me, and from the looks his wife gave him as she sat by his side.
Each day I propped open his eyelids, I saw a little bit more in his blank brown eyes. I found myself extracting emotion that lay hidden in the waxing and waning of his pupil dilations as I toyed with my penlight. Henry seems tired today, I’d tell myself. He must be relieved that he can rest. I’m sure he’ll be happier tomorrow.
Just three weeks prior, he was rolled onto the intensive care ward. He was already in a coma when he arrived after suffering a massive myocardial infarction during a procedure that was supposed to be simple and easy. Even at 60 years old, no one could have predicted that the elective vascular surgery would ultimately lead to his death.
Two weeks into his time in the ICU, I started to notice jaundice in those brown eyes of his. His kidneys were failing. It was time to decide whether to proceed with dialysis. If we did nothing, Henry would certainly die, but his chances of waking from the coma seemed slimmer by the day.
I had trouble explaining the situation to Lucy. “It’s your decision,” we told her. She looked to her husband for answers. I imagined him wearing a suit, giving her an answer without speaking. A knowing glance is all it would take.
“Do everything you can,” she concluded. “It’s what Henry would have wanted.”
We started dialysis, unsure of how his body might react. As the days passed, the bruises on his arms multiplied from the IVs, and the stillness in his body continued to eat away his muscles. As I checked his pupils, I caught myself speaking softly. “Do they know what you really want?” I’d never know, but I still searched with my penlight, hoping to find something, anything, to let me know that we were doing the right thing.
I started to read more about comas. I tried to imagine what it must be like for Henry. The heaviness of your eyelids. The black curtain blocking out all light and color. The rhythm of the breath that isn’t really yours. The panic. The silence. And then I realized how full of emotion my coma had become. I sensed I was fighting a deeply concerning truth that comas very likely could not coexist with emotion. I wanted to ask Lucy if she’d tried to visualize this as well. I wondered what she would have seen for Henry. Is her vision of his coma affecting her decisions as a surrogate? I decided it was unprofessional to ask.
Two days later, he suffered a stroke. His death was starting to seem more imminent. What once was a matter of if had turned very quickly into a matter of when. But how do you begin to explain this? She couldn’t help but cling to the hope that each intervention would restore her husband to the man she had described to me.
Lucy is his surrogate, I kept telling myself. She will make the best decision for Henry. We spoke of her options. But at this point, were they her options, or his? They used to make decisions together, she told me. I could see this was hard for her. I knew I had no right to judge her choices. Question them, probe them, help her verbalize them, that was my job. But it was not a comfortable job, and I couldn’t help but attach my own visions of Henry to our conversations.
Impartiality, just the facts. But even that was difficult. With Lucy speaking from a place of pure emotion, and I attempting complete rationality, we did not get very far. I realized how little I understood preparing for death, even though I was surrounded by it in the hospital. I was seeing, through Lucy, how powerful it could be in affecting another person. Every step of the way, I couldn’t help but wonder what Henry would have said.
In the three years I’d spent thus far learning how to be a doctor, I knew how to diagnose illness. I also knew how to conduct a proper patient interview, complete with techniques to probe without being intrusive, to glean the important facts about a person’s day to day life that could very well inform serious medical decisions. I had practiced my bedside manner, had made it a priority, even, and yet everything I had worked towards seemed useless to me now. How was I supposed to care for someone like this, where all modes of communication that I had come to rely on were no longer viable? I struggled to accept that the decisions of a surrogate were as sound as those made by the patient himself.
Then Henry had another stroke. It dawned on me–as we told Lucy that this one had resulted in brain death — she had not been making decisions for him or for her alone. She was making decisions for their family, weighing every last detail as her husband would have had he been present. I had yet to experience this divorce of the decision-making process from the receipt of care, but I started to understand how silently many patients must grapple with these same life-altering decisions. These choices, these approvals or denials of care, they always affect so many around them. Yet we only hear the final answers. The process behind these choices is almost always internalized, rarely voiced, but ever-present.
Extending his dialysis after his first stroke was something her family had needed. They were not ready to accept that his routine surgery had gone so terribly wrong that the foundation of their family was going to be gone. And if I believed her vision of her husband, he would have nudged her towards that decision even if he were conscious through the process.
It’s easy to say that emotion has no place in medicine — that decisions should be made based on medical science, on percentages, on rational choices. But I was also told that above all else, a patient’s best interest is the guiding force to follow. As this case evolved, I saw so clearly how a surrogate can become just as much of a patient as the one receiving the medical treatment. It was my duty to consider Lucy’s best interest as well, since supporting her directly affected the quality of care we could provide for Henry. Learning to trust a surrogate is never easy, but understanding the depth of the surrogate-patient relationship made me confident that we did everything we could to help Henry leave this world proudly.
All he was missing was his suit and tie.
Author’s note: All names have been changed to protect the identity of the patient and other parties.