Abstract
It's 3:28 p.m. on Thursday afternoon.
My father-in-law, who I will refer to as Sam, enters hospice after an admission to the ICU for sepsis. The transition from nursing home resident to hospice resident is difficult to differentiate. His room looks as it did before we changed his code status.
He lives on the second floor of the nursing home, the fourth room on the left beyond the nursing station. We get off the elevator greeted by a resident moving quickly down the hallway in her wheelchair away from the “memory ward.” She looks fearful; her accent makes it difficult to understand her repetitive shouts. We walk by cautiously.
One of the rooms next to the nursing station is home to a resident who screams “HELP!” with an eternity and rhythmicity similar to drops of water from a leaky pipe. Another wheelchair-bound patient, W, from the “memory ward” is a frequent guest of Sam's hallway. She looks delightful: white hair of wisdom with a perm to perfection, and small pink glasses to fit her petite figure. With marche à petits pas, W navigates her wheelchair down the hallway searching for her room.
Resident B doesn't seem to like me. B's lack of independence recapitulates the scowl on her face and stern demeanor. She often roams the hallway finding respite near the nursing station. I avoid eye contact with B. Her penetrating gaze of sadness and loneliness combined with frustration shakes me.
Before entering Sam's room, we hear the humidifier moisturizing air through his nasal cannula. He lays there frozen in time; trapped in a body entirely contracted for want of dopamine. His arduous journey to this moment and to this nursing facility, however, is worth mentioning.
I met Sam one year ago in his new residence, a psychiatric nursing facility. My fiancée warned me before our visit of his new-onset psychiatric illness within the past year. As his healthcare power of attorney, she shared with me his medical records. If you were to read Sam's chart, you might think twice about entering his room. Labeled with disparate diagnoses—ranging from obsessive compulsive disorder and hypersexuality to mood disorder not otherwise specified (NOS) and psychotic disorder NOS—his chart inexorably influences how we view him.
We walked down the corridor of his unit greeted by numerous patients in a manner reminiscent of scenes from One Flew Over the Cuckoo's Nest. He shared an open-layout room with three other men with psychiatric illness. I sheepishly introduced myself, and we shake hands with difficulty. Was he stiff, or resisting my movement?
Hi, Joshua. We exchange pleasantries, though his face is painted without expression. It's hard to miss his subtle resting tremor, or his slow and rigid movement. This 64-year-old man was pleasant, docile, and quiet. His presentation shared no semblance with the Sam of his health records and various Diagnostic and Statistical Manual of Mental Disorders (DSM) diagnoses NOS.
The week before I met Sam, he was assaulted by a patient on his floor. Sam had wandered into the patient's room confused. He thought it was his own. We tried to find a more suitable nursing facility for Sam, but no one would take him. His aforementioned DSM diagnoses NOS, we were told by one nursing home coordinator, “scared” these facilities.
Desperate for a fresh assessment of his condition, I reached out to a psychiatrist–neurologist I knew at the teaching hospital. She listened to our story with empathy and reviewed Sam's medical records. With diagnostic anchoring permeating the pages of his records, she scheduled an appointment with Sam the next week.
After a thorough history, physical examination, advanced imaging, and neuropsychological tests, this neurologist connected the dots when others had not. Sam was diagnosed with suspected rapidly progressive diffuse Lewy Body Dementia. She contacted the nursing facilities we previously visited, and informed them of her assessment. His behaviors were the result of neurological disease that she could manage with pharmacotherapy.
And just like that, Sam was accepted to a great nursing home. He is safe with a room of his own located in the hallway where W roams and B glares all alone. Sam has access to staff trained to provide care for patients with advanced dementia and… now hospice on Thursday at 3:28 p.m.
Each day greets us with déjà vecu. On the second floor, W roams the hallway and B's wheelchair is on the threshold of the door to her room. She stares at me without saying a word as I attempt, Hello. Sam lays quietly in his bed staring at the ceiling with his mouth open and body contracted. Conversation is difficult with one- to three-word responses that he produces with great difficulty. I ask Sam whether he's comfortable. Yes, he tells us. My fiancée moistens his mouth with Root Beer oral swabs.
The clock in his room reads 3:28 p.m. It's still broken; no one's fixed it. Each day is the same as the last with seldom perturbations from routine to help differentiate the days over the next three weeks. But all things come to an end.
I met Sam one year ago as a NOS psychiatric patient who had been deteriorating for well over a year, and now he is dying in hospice. When providers assessed Sam biased by his medical records, they were predestined to relabel this man as NOS. Otherwise used a specifier for noncategorizable presentations or to allow the patient time to differentiate, NOS for Sam sadly meant did not further investigate. This label allowed the etiology of his presentation to remain hidden behind NOS. To shake his hand, to watch him walk, and to look at his face provided insight into his fate.
On the day of Sam's death, he slowly passed surrounded by wonderful nurses and immediate family. His stiff and peaceful appearance in death mimicked his demeanor the last year of his life. The time on the clock was 2:45 a.m.; the seconds hand moving.