I sat outside my patient’s ICU room, my eyes glancing from his chart to him and his wife. The picture was grim. My patient, Tom, was a 56-year-old man, severely ill from decompensated cirrhosis, was admitted for the third time in a month with hypothermia from sepsis. Despite antibiotic therapy, he was not improving. Now his kidneys were failing from hepato-renal syndrome with a combined liver-kidney transplant, the only hope for a cure. He had also developed respiratory failure. He was dying.
That didn’t mean I couldn’t do anything. I could call anesthesia to intubate him. At which point, he would become hypotensive and need a central line to receive vasopressors. I could ask nephrology to start dialysis, which would require another line. I could add antibiotics. But then what? Would he make it out of the ICU? Without a liver-kidney transplant, he would inevitably die, and with these interventions, that would happen on a ventilator, unconscious, unable to interact with his loved ones. I heard his nurse ask, “So what are we doing here?”
I tried to determine whether he had undergone a transplant evaluation. It appeared he had, but I found his evaluation was closed. He was not a transplant candidate because he didn’t want one. This gave me pause. Patients generally don’t say that, and nothing I had seen from Tom or his family suggested they didn’t want one. The notes didn’t include anything about him declining a transplant. I spoke to Tom’s wife, who was adamant they were open to transplantation. It was what had been helping Tom push on, the hope for a new start.
As an intern, I would have been shocked. It was clear his transplant evaluation had been stopped with the rationale Tom didn’t want one, even though it was never documented, and he clearly did. As egregious as this was, the senior resident in me knew it didn’t matter now. Tom was never getting a transplant. It was essentially impossible, and the road to impossible was paved with immense suffering.
Someone needed to convey this to Tom’s family. It seemed the liver transplant team would assume this role. They came to see him, but they wouldn’t rule out a transplant. If Tom made it through this and came to clinic, they would reconsider transplantation. As I listened, anger welled inside me. They were painting a rosy picture, sparing the details of the harsh reality facing Tom. They left the impression anyone who suggested he was dying was giving up. They thought they were giving hope. But they were offering an illusion. I cornered the transplant fellow. Perhaps she would acknowledge to another provider this only ended one way. She had a formulaic response. “We never rule-out transplant. Have him come to the clinic.” They had said their piece.
I crouched beside Tom’s wife. “We’re going to have to make some big decisions. Is there anyone else you want here?” She looked back at me, I could see the pain in her eyes, but she was stoic. “I’ll rally the troops,” she said. In the three days Tom had been there, she had hardly left the bedside. She understood how sick he was and wanted him to get better but didn’t want him to suffer. I could see her heart and mind wrestling with each other. She needed the physicians to guide her. And she was being robbed of that. What could I do? There was no morality police to hold the transplant team accountable. I had hit a familiar stumbling block. How do you make another provider do the right thing?
Tom’s friends and family members arrived together. We sat in a conference room, Tom’s loved ones, his nurse, and me. His nurse was as invested as his family. She would be providing hands-on care and would see the pain that broke through, despite sedation.
I explained the situation and numbers to Tom’s loved ones. I told them I couldn’t say for certain he would die, and we could go forward with aggressive procedures, but Tom would likely suffer. I shared that although the liver doctors did not rule-out transplant, it was almost impossible that he would receive one. I finished, and there was a pause. “Thank you,” Tom’s daughter said. “Thank you for your honesty. I can see how hard this is for you.”
I cringed. I’d been taught the patient, or their family should never be comforting a provider. But then she said, “It means you care.” I choked back tears. In their moment of agony, she had the grace to see my turmoil. And I realized this grace was missing from the practice of modern medicine Tom had endured.
Information in hand, Tom’s family elected to focus on his comfort. The oxygen device that prevented Tom from eating or speaking was replaced with a nasal cannula. His pain medications were increased. Because he no longer needed ICU care, he was transferred to the general floor. I would no longer be his doctor.
I still had several hours of work left, another critically ill patient, an intern and medical student to oversee, a conspicuously absent fellow to update. After wrapping this up, I walked to my car that night, feeling alone. How could I explain what I’d been through? Who could understand what it’s like to tell someone their loved one is dying? Who could empathize with the fact that I’d had to do this instead of the doctors who were supposed to be caring for him? Finally, and frighteningly, who would stop it from happening again?
I got home and quickly ate a take-out sandwich. I showered and crawled into bed, preparing to face another day with similar challenges. I checked Tom’s chart on my computer. I saw he had already died. The last note was from his nurse: “Patient surrounded by family and friends who helped him finish the cheeseburger he’d ordered.”
There again was the grace that had been missing. Overcome, I couldn’t hold back any longer. I cried, burned out.
Sami El-Dalati is an infectious disease physician.
Image credit: Shutterstock.com