This is ridiculous.
That is what I said to myself while reviewing the chart of one of my recent inpatients. I let out a sigh so exaggerated that three nurses looked in my direction.
A critically ill gentleman had a ruthlessly aggressive and irreversible malignancy that was clearly declaring itself victorious over his young body, and it wasn't tolerating yet another chemo regimen. I shook my head as I scrolled through his labs. Evidence that every one of his organs was failing was apparent.
Despite a prolonged hospitalization, multiple chemo regimens with abysmal complications, and terrible relapses, a stubborn elephant was standing squarely in the doorway leading to his room. This man was dying.
But like many elephants in rooms, not many people wanted to acknowledge it.
“They cannot be serious,” I mumbled under my breath at the computer screen.
I was referring to the two-guns-blazing, horribly noxious chemo medication he'd just been started on that morning by the specialists. It was sure to make to make him feel like crap. It would likely make his failing kidneys fail more (which would make his failing lungs fill with more fluid and fail more). Furthermore, it also was likely to cause some of his final days to be ruled by nausea so intense that it was like having one's insides turned inside out. I hated to see him tortured when the prognosis was so poor.
The other thing was that, despite his critical state and the unlikeliness of a meaningful recovery, his chart still indicated that all heroic measures should be performed in the event of a cardiopulmonary arrest. Patients in this stage of disease often sign a “do not resuscitate” order—or as one of the Grady elders once put it to me, a “let me go in peace” order. But not this patient. I was determined to give him the courage to change his mind.
We talked for several minutes about all that had transpired over the last several weeks. I talked to him about the disabling side effects of the chemo regimens that were followed by gripping setbacks. Over. And over. And over again. I wondered if he knew that it was okay to say “no more.”
“What do you want?” I asked my patient in a quiet voice.
“What do I want.” He said it as a statement, not a question. Like he needed to let it marinate.
I cast my eyes downward toward his left hand that rested in my own. I couldn't help noticing his identification band; reminding me of what was so unfortunate about this situation. A man with a date of birth that was well after my own had to decide what he wanted. Or rather, how he wanted to die.
“I know what I really want,” he murmured with a sideways smile. I widened my eyes and encircled my fingers around his puffy hand. His rich chocolate skin was smattered with bruises from blood draws and capillary blood leaks. “I want…I mean…I don't want to die. That's…that's what I want. I want to live.”
Those words were like a dagger piercing me straight down to the white meat. This young father with a life full of unfinished items to cross off of his bucket list simply wanted what we all want. To live.
I didn't know what to say.
I watched his laborious breathing and tried not to notice his distorted body—all a result of the massive fluid that his failing body was accumulating. Beeping machines surrounded him and we did our best to ignore them.
Just then, a phlebotomist came in and wrapped a tourniquet around his arm.
“Hey friend,” she greeted him in that familiar tone only achieved through repetitive encounters.
“Hey, Vampire Lady,” he responded with a weak chuckle.
She quickly plunged the needle into the crook of his right arm. Methodically, she gently attached one glass tube after the next. She met my eyes for a fleeting moment; we both recognized how awful this was. The blood rolling against the sides of the container hypnotized me for a moment. Finally, I shook my head and came to.
What are we doing? I asked myself.
Chiming alarms. Tangled tubing. And someone jostling him from a quiet slumber to draw his blood every eight hours. All for what? I closed my eyes and swallowed hard. This sucked. Why were we doing all this to him? This gentleman was dying.
“Okay, friend, that should do it.” Vampire Lady carefully removed the rubber tubing from around his upper arm and placed a bandage on the oozing site. It would surely bleed out and around that bandage considering his failing bone marrow had robbed him of platelets and his failing liver wasn't making clotting factors.
“One of these days, you gon’ stick me and nothin’ is gon’ come out.” He laughed, not really realizing the irony of his joke. She also laughed, but her laughter sounded pained.
“Alright then, friend,” she responded before leaving. I decided that I liked the way she called him “friend.”
What I wanted
He looked like he was falling asleep. But his breaths were so fast and taxing that I knew it wouldn't last. He startled me when he returned to our initial conversation.
“I want to live. That's what I want. So whatever they have to give me, I'm gonna take it.”
That's what I wanted, too. I wanted you to live too. But the fact was that your body was dying. And since I had no panacea, I was looking for the next best thing—a peaceful journey to the other side.
The zealous therapy being offered to him by the specialists hurt me to watch. To me, every toxic bag of experimental, last-ditch medication hung on his IV pole translated to time away from his son and his wife. In my heart, I felt he wanted permission to let go. But since I was on a totally different page than my colleagues, there was very little I could do.
“You got a cure for me in your pocket?” He bravely smiled. I wished that I did.
At that moment, a nurse walked in and pricked his finger for a blood sugar measurement. I cringed, recognizing that even this—a simple piercing with a lancet to his middle finger—was more than I wanted him to endure. The nurse seemed to intuitively know to respect our “moment.”
I squeezed the brown pillow that had once been his hand, and put my other on his bony shoulder. His eyes closed in what seemed to be unison with my own. Before I could talk myself out of it, I uttered an internal prayer.
It was all I had left. It may not have been completely appropriate but if was out of my hands, and I felt the need to be obedient.
I opened my eyes just in time to see him mouth the words “thank you” while tightening his grip on my hand. I nodded slowly.
The alarm bells went off on his monitor signifying that his respiratory rate was high. I pressed the “silence” button. A minute later it sounded again.
“What do you want?” he asked me after a while.
“Excuse me?” I answered, surprised by him turning the question on me. I pushed the yellow silence button once more, hoping to get out of it.
He repeated. “What do you want.” Again in that same statement-like way. I decided to let it marinate, too.
I felt tears forming as his own bloodshot eyes pierced me with a tenacious gaze. What did I want? Was he serious? My heart was screaming:
I want you to live!
I want you to be cured!
I want you to put a boutonniere on your son's lapel on his wedding day!
I want you to argue with your wife over names for your next baby!
I want what you want!
I softened my brow and pressed my lips together to fight the mounting emotion. Finally, I offered him a childlike shrug and said, “I don't know…I just want…I just want you to have…a death with dignity. That's what I want at this point.”
“I'm dying for real, ain't I?”
I pressed my lips even harder and nodded. My eyes stung with tears. “Yes.” I paused to keep from crying. “I'm so sorry.”
Death with dignity
We stared at each other for a moment. This young man—nearly ten years my junior—with the perfect smile and twinkle in his eye, was dying. This husband, this father, this brother, this friend with skin of the same striking dark brownish-reddish hue as my son's, was being called home. And there was no denying it.
“I know I'm sick…but…does it make sense that I just can't…you know…put it in writing for y’all to not do anything for me? Like not revive me? I'm just…I just can't. I gotta keep fighting.”
“Even if it means…dying in…dying in the hospital?” There. I'd said it out loud. The “d” word.
“I don't want to die in the hospital.”
“But you could. Attached to all this.” I reached over and silenced the alarm again.
“I know.” He sighed hard. “But I just can't. See, tha's what's hard. I just can't say ‘no more.’ I gotta go down kicking and screaming. For my wife. For my son. It probably don't make no sense to, but I just can't make myself do nothing else. I just can't let go.”
And the truth is, it did make sense for a young father of a son that looked just like him and the husband of a doting wife to want to “go down kicking and screaming.” To have trouble with letting go. That's when it dawned on me.
Even though my agenda that morning was to get him to “have the courage” to halt all aggressive measures and get home to his family for his final days, I had to acknowledge what was true all along: He was courageous. Who did I think I was—marching in there with my agenda to “give him courage?” Me give him courage? He already had it.
This was his decision, not mine. And just maybe, a death that takes place in a hospital bed surrounded by beeping devices while fighting tooth and nail to the bitter end—for him—was a dignified death. I let go of my agenda and decided to respect his.
The alarm sounded again, and again I pressed that yellow square. Sixty more seconds of peace and quiet. It was the least I could do. I watched him as his eyelids floated downward and decided to ease toward the door.
“You know what I really want?” he broke the silence, startling me again.
I paused with my hand on the door. “Sir?”
“I think…I think right now I just want something to help me get a little sleep and to help me move these bowels.” We shared a quiet chuckle.
“Alright then, friend,” I responded before leaving his room.