The Patient Patient

In medical school, you only get one summer break, between your first and second years, and it’s recommended that you use the time to explore your clinical or research interests. I spent my summer doing a ten-week combined clinical-research experience at a cancer center. Even before it started, I had mentally vowed to learn all I could, and be all I could. The emphasis was – of course – on the learning; honestly, all I could be within a hospital was hardly much, with just the knowledge of a first year.

It was well into the summer, and I had already spent some time on the Solid Tumor floor, on the day I met Mr. Q. While rounds remained exciting and a constant review of microbiology, elementary pathology, neuroscience and gross anatomy, had taken on a semblance of routine. I knew the nurse practitioners, I had figured out the best coffee locations and I could don a precautions gown in almost record speed. Mr. Q was an older male with cancer with metastases to the brain, status post chemotherapy, now with complications of weakness on one side of his body.

I disinfected my hands diligently as we walked into his room, trailing the attending and the nurse practitioner who was managing his case. His wife was at the side of the bed, almost at the edge of her seat. She clutched a blanket in one hand, and the guardrail of his bed in the other. She granted us a weak smile, then turned to glance at her husband. He gave us a nod of greeting, his eyes taking in the lot of our team. He had dark, brilliant eyes, set in a parchment thin, wizened face that bore the marks of his ongoing battle with cancer. His brows were furrowed, and he mouthed something we could barely hear. Speech was difficult, and writing was impossible with the unilateral weakness.

On his wall, in addition to the pictures of family, and the get well cards, were a series of note cards with directions and clarifications. His wife had made them, in lieu of the white board which most of the vocally compromised patients depended on. One of them started with “Pain” and had arrows pointing to “Head,” “Neck,” “Belly.” Around it were cards saying, “Dull,” “Sharp,” “Heavy.” Further left were other cards, “Bathroom,” “TV,” “Water,” “Ice,” “Yogurt,” “Nurse.” A little lower, were a series of numbers, that didn’t seem to have a chronological order. I would later learn that they were his favorite television channels.

“How is he doing, today?” The NP asked his wife. She turned to her husband, who mouthed something once more, and waved his left hand over the Trach.

“Something’s wrong around the trach?”

He seemed to fan at it, indicating something around his neck. We all peered closer, straining to either hear what he said or see what he was pointing at.

“It’s swollen?” The attending suggested. “I can see there’s some swelling on the right side.”

Mr. Q nodded now, approving the track we were taking. He made a squeezing motion with his hand now, still at the level of his neck.

“It’s tight? On that side?” The NP picked up the thread now.

Mr. Q nodded again, mouthing something that seemed to be a confirmation. He leaned back into his pillows, the effort to convey his discomfort appearing to have worn him out.

“Okay, Mr. Q, we can loosen that right now. Do you have any pain, in that area?”

He waved his left hand somewhat vaguely around his neck, then turned to his wife, a silent communication.

“He has some pain, where the band is, around his neck,” she said, pointing at her own neck to demonstrate.

“Okay,” the NP nodded. “Okay, Mr. Q,” she added turning to him, “We’ll get you something for pain too.”

He nodded, giving us his first smile. I wondered if the pain had been the larger complaint, after all.

“Is there anything else we can do for you right now, Mr. Q?”

He shook his head, waving his left around his neck once again.

“Just your neck, right now, got it.” The NP affirmed.

“We’ll be here all weekend, Mr. Q,” the attending added, before we made our exit.

I vacated the room with a sense of deep frustration that was unlikely comparable to that felt by Mr. Q. Communication with one’s patient is often lauded as the cornerstone of medicine. How much more difficult lay the task of healing when that communication was so impaired; difficult for the physician certainly, but perhaps more so for the patient. In my time at the cancer center, I had learned that the word “cure,” is not circulated with the same freedom or frequency as in some other diseases.  Not simply because cancer is not one single disease, or because paraneoplastic syndromes (rare disorders that are triggered by an altered immune system response) take their additional toll on the patient, but because too often palliative care becomes the primary route the team must take. And in palliation, acute needs become the itch that will not go away, the dryness in the mouth, the cold, the pain, the swelling. The discomforts that made the cancer all the more unbearable.

It seemed a cruel twist of faith that even in this venture for comfort Mr. Q could find little recourse. I could not help noticing the ease with which we had at first directed our questions to his wife. As though, in some way, we had already forfeited his voice – quiet, rasping, strained as it was. “Listen to your patient.” “Speak up for your patient.” “Care for your patient.” Instructions in a classroom setting that could not capture the enormity of what that task entailed. “Listen to your patient, even when he has no voice, until you understand.” “Speak up for your patient, especially when you see his words being drowned out.” “Care for your patient, when that care is easy, but especially when it is hard.” These revisions, I mentally stored for the future in medicine that lay before me. Even as we walked through the hallway, the image of those cards was burned into my mind. Human needs reduced to a three-foot square cork board. Sometimes, in medicine, in cancer, that was all you had.