Soul

My patient--an elderly man with a shock of white hair-- was a cheerful bright spot on my list every morning. I had had him as a patient just two weeks prior for a complication from his underlying lung disease, a disease that was slowly killing him. Now he was back with fever and difficulty breathing, but every morning he still had a smile for me. My patient was a favorite with the whole team. We all loved him. He always smiled, was sharp as a tack, and always laughed at every little thing, no matter how much his body punished him for it.

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 for the rest of us. He had a disease where the lungs, for reasons unknown, scar up and become non-functional. The thick tissue becomes increasingly difficult to expand. The diffusion capacity of oxygen becomes less and less. 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 functional lung at this point," my attending declared, pointing to the ugly, scarred images on the computer screen. Classic, so-called "honey-combing" findings filled his middle and lower lobes bilaterally. It was no wonder he was now on a 100% oxygen on a non-rebreather mask and still needing to breathe 30 times a minute.

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 the patient was made DNR. We made him as comfortable as possible and treated him with antibiotics and we watched. And waited. I hoped he would get better.

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 just 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, 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.

"Yeah. He is dying. I think it will happen tonight."

Nurses see this all the time, more so than the doctors I think, because they are constantly going into the rooms and interacting with the patients. 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 people 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, 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 groan, sometimes a small, child-like cry, 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 nodded without attempting a smile, without meeting my eyes. I stood there, awkwardly, wishing I could comfort her but unable to. There is no comfort in situations like this. Smiles, hugs, condolences--they don't work because they don't change the fact that something very, very important is about to be taken away from you. That is what I saw on the woman's face. Her husband of fifty-something years was dying, and I was just the medical student. So I left her alone, and walked quickly back to my resident. I told my resident what I saw, and he upped my patient's dose of morphine for comfort, and then I stepped out of the room to cry in private. I went about my duties the rest of the day, only passing by my patient's room ever so briefly, but never going in. It was too painful. 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, my classmate came to 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 the death.

"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 had been fighting back tears the entire day, and just when I had gotten it under control, he died. I have had patients of mine die before, but never one I had connected to. One that I rooted for, and wanted to get better. 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 this stupid, senseless disease. And even as he was sitting there, actively dying, he could reach out to his doctors with such a sense of life and joy.

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

"Morning! Got a cure for me, doc?" he had joked around his oxygen mask and laughed. I 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 at the ceiling.

"He has the cure to everything."