“Nobody can help me, but you. You’ve fought for death with dignity for years, now fight for me.” Sam’s voice was a hiss of air, a faint echo of his former self.
Julie shut her eyes to battle back another wave of distress. “It will get better. You have to believe it will.”
“You’re a hypocrite.”
His words stung, but Julie understood his need to make it hurt.
“No, it’s different for you. There’s a lot of evidence that quality of life for-for people with your type of injury is about support and reintegration into the community.”
“My injury,” Sam said, the contempt almost palpable. “I’m quadriplegic and that’s what I am going to be for the rest of my life. I don’t want this. I don’t. I’m going to live out my days helpless in a hospital of some sort, and you know it. You know it and you have to help me.” Sam’s body might have been broken, but his mind was crisp and working strategically.
Julie had made a career out of keeping people alive who were on the edge of death. The torment and pain she’d observed over many years had altered her beliefs about administering care to the supremely sick. She always did her job to the best of her ability, but welcomed the day when caring for patients would mean having the option to end their suffering in a dignified way.
Sam wanted to die. Should he have that right? Was Julie being a hypocrite? It was true her beliefs were easier to maintain when she had no deeply personal connection to the patient wishing to die.
“I believe you can make a life,” Julie said, her voice not so convincing. “We can make a life together, and I want to be the one to help us do that. I know it can be a good life, too.”
“You believe that as much as you believe Nancy Cruzan should have been kept alive.”
“No. Nancy had no life whatsoever. It’s different.”
In one of her prepared talks about death with dignity, Julie had referred to the case of Nancy Beth Cruzan, who had been involved in an automobile accident that left her in a persistent vegetative state. Citing the due process clause of the fourteenth amendment, Nancy’s parents went to court to get their daughter’s feeding tube removed. In a five-to-four decision, the Missouri Supreme Court had ruled that individuals had the right to refuse medical treatment as long as they were competent to exercise that right. Without any clear and convincing evidence that Nancy Cruzan desired her treatment to be withdrawn, the tube remained in place. Nancy’s parents eventually proved to the court’s satisfaction that their daughter would not wish to be on life support. Nancy’s feeding tube was eventually removed, and soon after she died. The case gave rise to the broad adoption of advance life directives.
Was it so different for Sam? As much as Julie wanted to believe the two cases were unalike, at the core both were about quality of life. Sam had no mobility. He was completely dependent on others for everything, and would remain that way, most likely, for the remainder of his life. To him, this was no life at all. He might as well be in a vegetative state.
Should Sam have the same right as Nancy Cruzan?
He was certainly of sound mind, and there was no mistaking his desire. But his vitals were improving, and with time his mental state might change as well. If Julie had learned anything from her years in the ICU, it was that people were deeply resilient and could adapt to almost any situation.
Julie glanced at the waves running across the screen in the six divided sections of the telemetry monitor above Sam’s bed. The green EKG lead recorded a nice steady sinus rhythm, an indication of a healthy heart trapped inside a broken body. Sam could be fed, hydrated, and kept alive day after day, year after year. What he could not do was kill himself.
The pulse oximeter reading, a blue sinusoidal wave that mirrored the heart rate, showed Sam’s oxygen saturation at 99 percent. His lungs, just like his heart, were functioning fine and allowed for breathing, but with help, probably forever, because his spinal injury was complete-no motor or sensory function in the lowest sacral segment.
Help came in the form of a curved tube affixed to Sam’s neck by a plate called a flange. The tube inserted into Sam’s tracheostomy stoma-a hole made in his neck and windpipe-was permanent, but far better than the alternative of long-term ventilation. The procedure provided Sam with an open and clear airway, but made speech more difficult because air no longer passed through the vocal folds that produce sound. To facilitate speech, Julie had to intermittently block the tube with the palm of her hand to seal air inside the throat until enough air accumulated to allow Sam to talk again.
Eating was easier than speaking. Despite the tube, Sam could enjoy solid foods now, as much as he could enjoy anything. He’d had a steak dinner not long ago, specially marinated by the kitchen staff, but the meal brought him no joy.
The arterial section of the telemetry monitor, colored red, measured heartbeat to blood pressure. Sam was stable here as well, a solid ninety-five over fifty-eight. His meds would change over time, but he would always need a lot of them to be kept alive.
“You know how to kill me so you won’t get caught.”
“I don’t, Sam. Honest. They test for everything. And even if I could, I would never. I couldn’t.”
Sam tried to speak, but no sound came out. Julie capped the tube with her palm and waited a few moments while Sam labored to breathe through his nose and mouth.
“The best care should be made available to every patient,” Sam said in a raspy voice, “but a patient deserves the right to hasten death to avoid inhumane suffering or escape from a life turned unbearable.”
“Don’t throw my own words back at me,” Julie said.
“Then… you… are… a liar…” Sam was having trouble with his speech again.
Julie once more had to cap the tube, but was afraid he’d utter more hurtful words.
“Things may change in a few months,” Julie said. “There have been cases.”
“Don’t… don’t give me false hope. You understand the films better than I do, and I got a perfectly clear picture of the rest of my life.”
Julie had a picture, too. It was indeed bleak. Sam would eventually be discharged to the rehab floor at White Memorial, where he could easily spend the better part of a year. And what would that year look like? In the mornings Julie would visit with him, feed him breakfast before the start of her shift. He would then have a sponge bath, and if he did not move his bowels in a diaper, he would most likely endure a second cleaning later on. Then it would be off to physical therapy where some young, able-bodied person would move Sam’s limbs so that the muscles did not atrophy completely. If her schedule allowed, Julie could feed Sam lunch before the occupational therapists would try to teach him to do with his mouth what he had done with his hands.
His days would be an endless grind.
“I know it seems hopeless right now,” Julie said as she caressed Sam’s face. “But you have to believe me, because there is hope for better tomorrows.”
“I resent your optimism.”
Julie did not respond. She glanced down at her watch. The visitor she had invited would be arriving here any minute.
“I understand,” Julie said. “And I’m about to give you another reason to resent me.”
At that moment, the door to Sam’s cubicle opened. A thin woman entered, not tall, barely five foot four, with a pretty face, thick dark hair down to her shoulders, and large brown eyes full of kindness. She wore a beige cardigan sweater and black slacks, and some sort of ID hung from a lanyard around her neck. She acted unhurried, and by that alone Sam could have guessed she was not a doctor here. Her lithe body and graceful movements suggested past training as a ballet dancer.
“Hello, Sam, my name is Michelle Stevenson. Julie asked me to come see you. Is now a good time? I can come back later if you’d prefer.” She spoke clearly, somehow striking the right balance between a professional tone and something more intimate.