7
Janel yawned deeply, his head rolling slowly back in his wheelchair until he nearly bumped into the kitsch painting of sailboats hanging on the wall behind him.
“I guess that can serve as our airway exam,” the anesthesiologist said as she chuckled, referring to the need for a preoperative examination of the back of the throat. She would be the doctor passing the breathing tube into Janel’s lungs after putting him under in the operating room.
We were assembled in what we call the “family meeting room,” a small wood-paneled conference room just down the hall from the hospital ward where patients and their families can convene with the medical staff in a quieter and more comfortable setting than the small patient rooms. Countless times as a resident, I had sat with expectant families in this room and others like it to provide updates on their loved ones’ condition, to present bad news, or to discuss difficult choices.
Today, none of the individuals in the room with Janel were members of his family. The group consisted of the anesthesia team, Janel’s nurse, a Haitian Creole interpreter, a social worker, Hermide, and me. Neurosurgeon Ian Dunn was on his way. The room was just barely large enough to accommodate the oblong Formica conference table and everyone sitting around it.
As we waited for Ian, I wondered what it all looked like to Janel. It had been about a week since his first plane ride, his first elevator ride. We still hadn’t exchanged more than a few words despite my daily visits to his hospital room. Michelle, Anne, and Hermide hadn’t had better luck even with their fluent Creole.
I prided myself on being able to make some kind of connection with most of my patients, especially my Haitian American patients in Boston, whose expressions often brightened when they heard I could produce a few phrases in Creole. I hadn’t expected to become friends with Janel. He would see me as his doctor and would presumably want me to see him as my patient. But I found it challenging to know how to approach the little details of his comfort and the larger aspects of his care without being able to communicate with him. I wasn’t sure what he understood, what he wanted, what he needed, what he expected, what he hoped for.
Why didn’t he talk to us? Was it his brain tumor? His personality? The disorientation of being alone in Boston, surrounded by strangers speaking English, looking out from a tenth floor window when he’d never left the ground before? We didn’t know.
A social worker and psychiatrist from the mental health team at HUM had evaluated Janel before he came to Boston to make sure he truly understood the risks and benefits of surgery. They had told us he did and that a full report would follow. We had received the report a few days after Janel arrived at Brigham.
The social worker and psychiatrist had written that Janel didn’t speak much, and when he did, he spoke slowly. They described Janel as “cooperative and endearing,” frequently making eye contact with them. They described his cognition as “slowed and dulled” but reported that, in spite of this, his insight and judgment were “intact”:
This young man reports that he is aware he has an illness in his head and that he requires a procedure for treatment. He recognizes that this illness is potentially fatal and that the intervention, while it has a likelihood of improving his health, carries significant risks, including death. Due to physical discomfort (he had significant pain in his head and needed to lie down often), we were not able to speak with him at length. However, he explained that his religious faith keeps him going, and that he remains hopeful about his future. He continues to pray daily.
In terms of capacity, he was able to confirm his understanding of the surgical intervention, the risks and benefits, and his desire to undergo the procedure. He also stated that he trusts Wilner to speak on his behalf. We did not detect any evidence of mental illness that interferes with his ability to make decisions on his own. While his cognition is impaired due to physical illness, he is coherent. Furthermore, he is reflective and self-aware and wishes to participate in his medical care.
Michelle, Anne, Hermide, and I had difficulty imagining Janel communicating all of this, considering we had not heard any more than a rare “Wi” (“Yes”) from him since he had arrived. Maybe he was simply more comfortable speaking openly in Haiti. We hoped this would change as he got used to us, since he could be spending up to two months in Boston.
The report concluded:
Despite the challenges his family faces related to living in rural Haiti, he is embedded within a loving and supportive family and community. Furthermore, he has been reflective about this entire experience, suggesting psychological fortitude, and he is expressing hopefulness for his future. Nonetheless, he is now facing a life-changing event and intervention without any of these supports physically present with him. Psychologically, this would be potentially traumatizing for anyone. Therefore, every effort should be made to strengthen and bolster his psychological and social reserves.
Since we were having difficulty engaging with Janel, Michelle had asked some young Haitian Americans who lived in Boston and worked for her organization, EqualHealth, to come keep him company. One day a young woman about Janel’s age was going through the TV channels with him, trying to find something he liked, as I’d done unsuccessfully on a few occasions.
She flipped to a cartoon channel. “Dessin anime?” she asked him.
A quick, small, once back-and-forth of his head. No.
The next channel had a high-speed car chase. “Film d’action?”
The same gesture. Another no.
She changed the channel again. An alien movie. “Film extraterrestre?”
He closed his eyes. No again.
She flipped to the next channel. A soccer match. “Football? Ou renmen football?” She looked at him hopefully. Soccer is very popular in Haiti. Men crowd around small television sets in one-room restaurants to get a glimpse of a game, cheering wildly for their favorite teams.
Janel closed his eyes again.
She went to the next channel. A woman and man kissing with a swell of romantic music. “Film d’amour?” She looked at him and frowned, expecting a definite no to this one.
He smiled slightly and slowly began nodding his head up and down.
“Oooo ooo,” she half sang, half squealed. “Janel renmen film d’amour!” she sang as if teasing a childhood friend on the playground. (“Janel likes romantic movies!”)
Now he smiled fully at her. A broad smile, showing all of his bright white teeth, his lower lip jutting out and curling slightly as his smile grew. It was the first time I’d seen him make any substantial facial expression.
“W renmen film d’amour, Janel?” I asked, smiling and trying to join in the dialogue by repeating what the young woman had said. (“You like romantic movies, Janel?”)
He turned his head slowly toward me, his smile taking on a more mischievous air. He quickly raised and lowered his eyebrows as he lifted his chin briskly upward.
There’s a twenty-three-year-old boy in there after all! I thought. His smile slowly receded as he watched the movie, and he settled back into his usual, staring silence. It was the only moment that felt close to a meaningful interaction with him in the entire week he’d been in Boston.
* * *
The door to the family meeting room opened, and Ian Dunn appeared in blue scrubs and a long white coat. Although we had emailed each other, I’d never seen him before. He looked only a few years older than me, and yet he had a certain gravitas: tall, with a broad-shouldered athletic build, short dark blond hair graying at the temples combed to one side over a high forehead, and intensely focused dark blue eyes with light purple shadows beneath them. He walked with a clear sense of purpose as he made his way to the only open seat at the head of the table. I introduced myself and shook hands with him. My hand felt small compared to his and collapsed in his strong grip—a surgeon’s handshake.