Authors: Daniel Palmer
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.
Sam directed his frosty gaze up at the ceiling. Julie gently lifted Sam’s head and readjusted the thin, firm pillows to give him a better look at this stranger.
“Why are you here?” Sam asked.
“I’m with an organization called Very Much Alive. And I’m here to convince you that there is a good quality of life for quadriplegics. Now, I know you disagree,” Michelle said, preempting Sam’s rebuttal, “but all I ask is your willingness to listen, and it will cost only your time. If I’m successful, and I believe I will be, I’ll give something back to you that’s very precious indeed.”
“And that is?”
“Your desire to live.”
Julie had known about Very Much Alive before she contacted the organization. In fact, she was probably on their list of least favorite doctors. In disability rights circles, Very Much Alive was considered one of the most formidable. The group organized demonstrations, was active on the lecture circuit, wrote peer-reviewed papers for many respected journals, and engaged in constant battle online, in the media, and in the halls of Congress with organizations such as Humane Choices, which advocated for death with dignity.
VMA had some of the best counselors in the business, who were expert at convincing others to change their views, including several patients who had wanted to die and now were spokespeople for Very Much Alive. Their stories were displayed prominently on the organization’s website with pull quotes, videos, and essays explaining how they came to their change of heart. Hopeful that VMA could reach Sam, Julie had made the call.
Sam’s eyes narrowed into slits, his teeth clenched, and the veins on his neck bulged just as they had the day Julie stuck a needle in his chest.
“You should … have told me … she was coming.” Sam labored to get out the words.
Julie capped his tube with her palm to fill his throat up with air again.
“In fairness to Julie, I’m the one who suggested we keep my visit here a secret. From what she told me about your situation, I was fairly certain you would have refused to see me. At least now I can plead my case, and all it’s going to cost is a few minutes of your time.”
“Please, darling. Five minutes. Hear her out.”
Sam turned his head away from Julie. He would have gotten out of bed and left the room, if only he could.
“Julie told me about the accident,” Michelle said, “and I want you to know how truly sorry I am for what’s happened to you.”
“Not as sorry as I am,” Sam said.
Michelle cast her glance to the floor and nodded in agreement.
“What is it you want from me?” Sam asked.
“I’ll get right to it. My organization opposes physician-assisted suicide. We view it as a lethal form of discrimination against disabled people.”
“What you call lethal discrimination, I call mercy,” Sam said.
“With time, your thoughts and feelings may change. We’ve seen it with other people in circumstances similar to yours.”
Sam nodded to Julie in a way that told her to cap his tube.
“There are drugs you can take that can induce temporary paralysis,” he said. “Why don’t you try living like me for a while and see how you like it.”
Julie glanced at Michelle and had no trouble reading the woman’s thoughts. This was going to be an uphill battle all the way.
“There’s no question you’re suffering,” Michelle said. “But is it unbearable? Who is the judge?”
“On that point, I think I am,” Sam said flatly.
“No. Your physician would actually become the ultimate judge, because he or she would have to take the steps to bring about your death. Right now, you might not be in the best place to guide that thinking.”
This was one area where Julie had gone head on with groups like Very Much Alive. Suffering was considered to be part of the human condition, as groups opposed to mercy killing often argued. Medicine, Julie said in her speech, was nothing more than a manufactured way to alleviate a natural process. Her argument went that mercy killing, as a means to end suffering, should therefore be treated as viable medicine. In her seminars, Julie asked, was it fair to force people to exist, often in agony, just for the sake of existing?
Sam eyed Michelle skeptically. “Are you suggesting I’m not rational, or that my judgment is somehow impaired? Want to quiz me on American history? I’ll get a hundred. Guaranteed. Or better yet, I’ll quiz you.”
Michelle was well practiced at dealing with adversaries. “I’m sure you know our country’s history better than I do,” she said, a trace of a smile curving her full lips. “But that has no bearing on the fact that assisted suicide is not the answer.”
Michelle had an ethereal quality, something inherently light, almost fairylike. She had high cheekbones and a slightly angular face. From their conversations, Julie had learned that Michelle had been married twice, and was close to fifty, but she looked easily a decade younger. She radiated warmth, and Julie cast aside any doubts she’d had about this meeting. If anyone could open Sam’s mind to new possibilities, it was Michelle.
“Pardon me if I sound rude here, Michelle,” Sam said, “but I think that I know best if my life is worth living.”
Uh-oh,
Julie thought.
Here we go.
“I’m not saying you don’t,” Michelle answered. “We live in a society that values physical ability. It’s completely understandable how your injury not only robbed you of your mobility, but of your dignity as well.”
“Thanks for getting it.”
Sam had never been sarcastic with Julie before, but the injury had changed much about him.
“At first blush, assisted suicide might seem like a good thing to have available,” Michelle went on. “But dig deeper and you’ll see the problems.”
Julie shrank a little from the look Michelle gave her. She obviously knew all about Julie’s papers and lectures advocating passage of death with dignity laws nationwide.
“It’s fear of living a disabled life that makes you want to die,” Michelle said. “It’s fear of the indignity, of not being able to get out of bed, or use the toilet on your own. But this is new for you. Over time, you’ll learn that needing help is not undignified, and that death is a far worse choice than assistance. Depression can be treated, Sam, but there’s no known cure for a lethal prescription.”
“Is this what you do for a living?” Sam asked. “Try and keep quads alive?”
His breathing had turned ragged. Julie gave him a drink of water, then capped his tube so that he’d be able to continue antagonizing Michelle.
“Not exactly,” Michelle said. “What we believe is that legalization of assisted suicide and euthanasia will lead to policies that discriminate against the disabled, poor, and underinsured. We want to protect people from doctors who tell patients they have six months to live when the prognosis of a shortened life expectancy is often wrong. And once society authorizes assisted suicide for the terminally ill, it’s inevitable the scope will increase to include those who cannot self-administer lethal drugs.”
“Well, that would be me,” Sam said. “And you have yet to convince me that lethal drugs shouldn’t be allowed.”
“Right,” Michelle said. “At first glance, your argument makes sense. Who better to make this decision than the person suffering from the condition? There’s no question your perception of quality of life is going to have to change. But your brain is still sharp as ever, and technology has come a long way.
“You can still read, write, and share your ideas with others. You can still watch a baseball game, smell the fresh-cut spring grass, or taste a delicious meal. I’m not saying it’s going to be easy, but it is possible to find enjoyment in new things, or a new appreciation for what you already know. There’s a danger we all face if we allow the lives of disabled people to be viewed as not worth living.”
Sam scoffed. “So now I have to be the poster boy for everybody else?”
“Not at all,” Michelle said. “But I am asking you to give it more time. See if your perspective about quality of life changes. If you won’t do it for yourself, then do it for Julie.”
Julie set her hand on Sam’s shoulder. She had not thought she had a single tear left inside her, but that familiar lump came back to her throat as her eyes watered.
“Give it time,” Julie said. “Please, Sam, for us. Let’s give it more time. Let’s put our energy on living, not dying.”
Sam motioned for Julie to cap his tube. Once he could speak more easily, he stayed silent long enough for the mood in the room to turn even more uncomfortable.
“What’s your deal with this, Michelle?” Sam eventually asked. “Why do you care so much?” His voice had turned soft, and his eyes were heavy.
It was obvious to Julie that this conversation had taken an enormous physical and emotional toll on him. It had on her, as well.
“You ask a fair question of me,” Michelle said. “And it’s a story I think you may be able to relate to. Do you want to hear it?”