Great article from NEJM.

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 Comments open through December 30, 2020

Article

My patient’s swollen knee stood out in a body sculpted by illness. His limbs were pale and tapered, his belly tented by the end-stage cirrhosis that he knew could soon take his life. More hopeful than expectant, I explained that his knee would need to be drained, that I had done this before, that the fluid should come out easily.

“Will it hurt?” he asked in an unidentifiable accent, searching me with milky eyes.

 

“Yes,” I said. “But you’ll feel a lot better afterward.”

“At least you are honest,” he said, smiling briefly. A mesh of wrinkles dipped into his hollow temples and sunken cheeks as he signed the hospital’s brief consent form in spidery script.

But the fluid did not come out easily. The joint aspiration hurt more than expected. His breathing came in shallow waves as I withdrew and reinserted the needle, hitting bone and hunting.

A fundamental challenge when seeking consent is the inability to know what will happen next. Only if a decision is well informed can patients’ consent be considered valid. But patients may not understand the implications of their decision until after a procedure or an interaction has started.

The first joint aspiration I performed as a resident occurred late at night, 3 years before I saw this old man with cirrhosis. A trembling young man with a swollen knee had lain in the emergency department hallway. My senior resident, though torn among the many patients whose care she was managing overnight, still insisted on walking me through each step. In a few months she’d start her cardiology fellowship, and this was her last chance to pass on what she knew about swollen joints.

The knowledge didn’t seem to take. Each pass with the needle had produced the dull thunk of metal on bone and the tension of muscles signaling pain.

Finally, I had extracted a few drops of thick, bloody fluid. I’d looked back at the young man. His cheeks sagged beneath exhausted eyes rimmed by tears that the past half hour had brought.

As part of the consent process, I had explained my inexperience in discomfiting detail before going on to explain the standard risks and benefits of the procedure. He had understood that he could wait until morning for someone more experienced, but he had instead allowed me to proceed. Still, I’d felt the same guilty gratitude that I felt seeing all the patients who allowed me, by choice or by ambulance, to learn from their bodies. But it was nighttime. He was sick. And at the moment, there was no one else.

I had no such justification for draining the older man’s knee. It was daytime. There were other doctors around. It was supposedly a minor procedure. Yet what should have been a minutes-long interlude in an admission dominated by more serious matters was turning into a mess lasting hours. His initial consent began to seem far from informed.

I was puzzled. I reiterated the risks each time I swapped the needle for a larger-gauge one from the pile of supplies I’d assembled on his meal tray, repositioned, refroze, and tried again. I suggested having someone more experienced take over. But instead of acceding to my suggestion, he urged me to continue.

I knew why I kept going: out of the hope that these experiences would shape me into the therapeutic instrument I longed to be. So I didn’t press the matter much further right then. I shut his curtain to block the midday glare. Forcing myself to focus on the needle’s angle, I had trouble paying attention to his opinions of his grandchildren. My responses shrank to deflecting grunts.

Finally, a flash of golden fluid filled the syringe. I withdrew and sank into the chair by his bed. He lay back, recovering. The radiator by the window rattled and hummed.

In the years that followed, I grew comfortable aspirating joints. I finished residency. Echoes of my training were everywhere. One day I cared for an artist with a rare neurologic condition who had passed through my old teaching hospital before seeing me.

Hoping for a chance to reminisce, I asked him if anyone he’d seen at the hospital stood out in his mind. To my surprise, he immediately mentioned the medical student who saw him on the night he arrived.

“She was the one who diagnosed me,” he said. He believed that her detailed history and physical exam had allowed her to discover what his doctors had missed.

A few days later, when he realized that his condition could be fatal, his time with her and other trainees gained a dimension he hadn’t anticipated. His decision to have them participate in his care hadn’t changed — his reasoning had. Having spent his artistic career offering aspects of himself to the world, he felt that this might be his last chance. They were hungry to learn, and he knew he had so much to offer.

“I told them,” he said, “that I’m not worried about the outcome. I want you guys learning about this so that you know how to approach it the next time you see it.”

Settings and staffing frequently change over the course of an illness. People change, too. The philosopher L.A. Paul suggests that illness can be a transformative experience, changing one’s priorities and motives in ways that can’t be predicted beforehand. As a result, Paul suggests, there may be no such thing as true a priori informed consent.¹

Perhaps, then, consent must be an ongoing process. It begins the moment physicians meet patients, when we request permission to examine, randomize, inject, or operate. But it shouldn’t end with a signature on a form. Done right, true, affirmative, informed consent is a conversation that continues between doctor and patient as circumstances change and motives multiply.

By the time we met, the man with cirrhosis had been admitted many times and knew the system well. He knew what my sweat and repositioning implied and what my repeated offers to stop meant. I had spent the afternoon exposing my inexperience until it couldn’t be clearer. In response, he had offered himself.

The joint aspiration had not really been for his benefit, not after my first attempt. He had realized that fact long before I did. But it wasn’t for my benefit, either. I was just a vessel for the ultimate recipients of his offering. That was why he had let me continue.

Speaking with him after I’d finished, I had a sense of him as a link in a chain, joined with others across the length of my career. Patients he would never meet would benefit from his gift. They, in turn, might pay that debt forward. I stared at him, humbled by his kindness. He noticed me staring.

“There is something I want you to have,” he said. The sky outside was beginning to darken. Shadows were settling into the hollows of his cheeks.

I laughed uneasily. I didn’t feel comfortable accepting a gift. I still felt uncomfortable about having drained his knee. “Don’t worry about it,” I said.

“No,” he insisted. “You misunderstand.”

I stopped, startled by the sudden quiet tenderness in his voice.

“My family is a family of priests,” he explained. “I want to give you a blessing.”

He rummaged through his bedside table and unfolded a creased skullcap. It didn’t quite reach his fringe of hair and floated, flat, on top of his head.

I hesitated for a moment. Then, I laid down my stethoscope and pushed his meal tray aside. He swung his legs over the side of the bed and extended his thin fingers toward me, waving me closer. I approached him and knelt. I closed my eyes.

His palms felt warm against my head. His voice was quiet. From the hallway came the chime of a distant call bell. I strained to hear the murmur of his ancient words and sensed the silent hope of doctors for patients, of teachers for students, of parents for children: that inside others, some part of us might live on.