Remembering: Soul

The following is a reblogged, edited tribute to one of my patients. I want others to remember his story, because if our final moments reveal who we really are, he showed me what a beautiful soul looks like.

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The patient–a spry, elderly man with a shock of salt-and-pepper hair– was a cheerful bright spot on my list every morning. He had come through my team’s service just two weeks prior for a complication of his lethal chronic lung disease, and I remembered sending him home with a laundry list of medications. Now he was back with fever and difficulty breathing, but every morning he still had a smile for me. He was a favorite with the whole team. We all loved him. He had an infectious grin, a sharp mind, and always laughed at every little thing, no matter how much his body punished him for it. He was the kind of person that could make complete strangers smile and feel at ease

But as I scoured through my library search engines, looking for up to date literature on the treatment of his rare lung disease, I only came up with more bad news. He had a disease where the lungs, for reasons unknown, scar up and become non-functional. The thick tissue becomes increasingly difficult to expand, like a piece of gum that starts soft and chewable, but as the sugar disappears, becomes hard and rock-like. Sometimes this disease (from a family of disease called interstitial lung disease) can be slowed by chemotherapy, but he had failed all the standard regimens. We saw the evidence on his CT scan of his chest.

“This man has less than half of a half of a functional lung at this point,” my attending declared, pointing to the ugly, scarred images on the computer screen. Classic, so-called “honey-comb” findings filled his middle and lower lobes bilaterally. It was no wonder he was now at a 100% oxygen on a non-rebreather mask and still needing to breathe 30 times a minute. “Would you intubate this guy? I wouldn’t. You intubate him, he never comes off.”

I looked at my stack of papers, at New England Journal of Medicine reviews and a set of guidelines from the American College of Chest Physicians. The outlook was grim.

“Most patients live for 3 to 5 years after their diagnosis.” My patient was diagnosed three years ago. “Patients coming into the hospital with acute decompensation have a 30-50% of dying.” This was his second decompensation in a month. “There is no good evidence pointing toward any real benefit from current therapeutic interventions, other than a lung transplant.” At his age and decompensated state, there was no way my patient could get a lung.

My attending had a discussion with the family, and they requested a do not resuscitate order. In fact, they had requested the same on his last admission. We made him as comfortable as possible and treated him with broad spectrum antibiotics and we watched. And waited. I hoped he would get better, like the last time.

But within a few days, it was obvious he was getting worse. On my call day, I walked into his room and my patient was not responsive. His eyes were closed and he was leaning back. He was using all possible accessory muscles–his abdominal muscles, his chest muscles, his back, even his neck muscles–in giant, strained, heroic heaves, just to breathe, just for air. I saw in his chart that he had received morphine for a panic attack earlier that morning, because he was suffocating to death. His wife was in the room, and her eyes were filmy with tears. I listened to his heart and to his lungs–nasty dry crackles, wheezes, velcro-like inspiratory effort–and then I walked out quietly. I went to his nurse and said,

“My patient doesn’t look well.”

She looked up at me, serious but matter of fact.

“Yeah. He is dying. I think it will happen tonight.”

When a nurse says she thinks a patient is going to die, I listen.

Throughout the day, I checked in on my patient, and before the morning was over, there was a sudden explosion of people. Twenty, thirty something family members crowded into his room, weeping, saying goodbye, spilling out into the corridor, lining the hallways with their heads hanging and their eyes red. My resident had sent me to check to make sure my patient was not in any pain. I walked into the room, watched him for awhile, grunting, struggling to breathe, nearly lifting his body off the bed each time as he obeyed his brain’s demand for more air, more air. An occasional haggard groan, sometimes a small, child-like whimper, passed through his lips. His eyes remained closed. A woman, who looked like his daughter, was tearfully kissing his forehead, while a young teenage boy sat by his bed, holding his hand.

I sought out his wife, who was surrounded by her sons, and touched her gently on the arm.

“Ma’am,” I said, “please let his nurse know immediately if your husband looks in pain. There is no need for him to suffer. We have written an order for pain medication, and the moment you think he needs it, tell someone and they will come give it to him.”

His wife barely nodded without attempting a smile, without meeting my eyes. I stood there, awkwardly, wishing I could comfort her but unable to. The woman’s face was filled with the truth that her husband of fifty years was dying before her eyes, and I was just the student. So I left her and walked quickly back to my resident. I told him what I saw, and he increased my patient’s dose of morphine for comfort, and then I stepped out of the room to cry. I went about my duties the rest of the day, only passing by my patient’s room ever so briefly, but never going in. The nurse’s notes said it all:

“Respiratory therapy is withdrawing care. Family in mourning at bedside.”

That evening, after finishing a paracentesis on a cirrhotic patient with ascites, I encountered my classmate in the stairwell. She approached me with a serious look on her face. She told me that my patient had passed away. I found my resident charting outside of the patient’s room, documenting.

“No detectable pulse, no respiratory effort, no heart beat, no corneal reflex,” he said, pointing out the parts in his note. “This is how you declare death.”

I did not go back into his room, even though I could have. I was hesitant to and I felt like it would be wrong, somehow, to return to his beside when he had already left it. I had patients of mine die before, but never one I had connected to like that, and one that, up until 24 hours before his death, was so fully neurologically intact. There was nothing wrong with his brain. Just his lungs full of a stupid, senseless disease. I realized, thinking about his last days with us, that even as he had been actively dying, up until the very last minute he could reach out from his bed, around the plastic apparatus on his face, and touch us with his spirit and his smile and his warm heart.

The last real conversation we had with him was the day before he died. My team walked into his room and his wife was there with him.

“Morning! Got a cure for me, doc?” he had joked through his oxygen mask and laughed. We all smiled back, but not as cheerily. His wife, a sweet, frail lady, with large and wise eyes, replied:

“We know who has the cure. The man up there.”

She pointed to the sky.

“Yes, yes,” my patient had responded with enthusiasm, nodding and shaking his head. With a broad smile, he also pointed heavenward.

“He has the cure to everything.”

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