Tuesday, August 6, 2019

Quality of life

By Nikesh Bajaj

“You were one of the only positive ones,” Alfred said with a half-hearted smile. His drained soul felt like a black hole in the room. “I remember you because of that,” he continued, “everyone else in the hospital was pretty grim.” As a second-year neurology resident, being one of the “positive” ones felt like a heavy burden weighing down on my chest. He remembered me after a single encounter in the hospital, months after his wife's discharge.

Alfred's wife lay still on her long-term hospital bed; her thin frame, her short black hair, her eyes spontaneously darting around the room, her right arm fixed in a bent position, her right hand gripping tight on her left arm, which remained straight and spastic.

“I'm glad to have provided that comfort,” I said.

Alfred was referring to one of my first call nights as a fresh neurology resident coming off of my intern year. Previously, his wife had a normal life, with her husband and two sons. Besides some common anxiety, she had no medical problems prior to this. Then one day, she had sudden onset of the worst headache of her life. That description always makes neurologists think about one specific devastating nightmare.

She was initially taken to a different hospital where a stat CT scan of her head revealed a large subarachnoid hemorrhage. She was then transferred to my base hospital for a “higher level of care” in the neurosurgical intensive care unit. Neurosurgery performed a hemicraniectomy and clipped her posterior communicating artery aneurysm. The abrupt changes left Alfred devastated.

On my call night, I was consulted by the neurosurgical service to evaluate the patient for seizures in the setting of her poor mental status. She lay there, eyes open and intubated without sedation. She had no responses to my verbal or physical stimuli. The extensive damage her brain suffered during her hospital course was obvious. She was in a coma and her prognosis was extremely poor; in reality she had a low likelihood of having a meaningful recovery. I didn't tell Alfred that at the time though.

Alfred was there next to her every day in the hospital. He'd sit patiently, holding her hand at the bedside. He watched the revolving door of doctors entering and exiting the room with haste to avoid the tough questions. Alfred wanted to know if and when his wife would get better, and what the best possible scenario was. He wanted closure. He was always told the same answer: “We don't know.”

The question that patients' loved ones don't know to ask is: “What is my family member's chance of meaningful recovery?” This is the toughest question because “meaningful” can mean different things to different people.

As a fourth-year-medical student, I was fortunate to get some clues from my work with Dr. Carol DeLine, a pediatric neurologist who treated severely debilitated children on a daily basis. It was heart-wrenching to see so many young patients who would never experience learning to ride a bike or going to prom with a high school sweetheart. The more comatose and cognitively-disabled kids I evaluated, the more nagging a particular question formed in my head. One day, I finally asked her, “How do you define quality of life?”

“The ability to give or receive love,” she said. The definition was so clear and succinct, as if Dr. DeLine had a dictionary for life's intangibles. She had clearly tested her criteria on numerous cases throughout her illustrious career. Since then, I have built this definition into my framework for navigating these difficult discussions.

Alfred quit his job to be able to stay with his wife at her long-term care center. He had been depleting their savings to keep a close eye on her. When a patient dies, their loved ones can grieve, but the love of Alfred's life went from normal to comatose and it left him unsure of what to do with himself. Alfred was lost in space and I felt tasked with bringing him back to earth.

I tried to tell him to go back to work and to spend more time with his children, but he was concerned that his wife would not receive adequate care without him around. Alfred shared the details of all of his wife's subtle improvements since leaving the hospital, and it was clear he was hanging onto anything he could if it meant he could have his wife back. It left me in a difficult place in terms of counseling him. I had to tow the line between minimizing his expectations and avoiding saying anything that I did not know to be true.

In her current state, Alfred's wife could now regard her examiner and often appeared to make meaningful eye contact. It was possible that over time she had improved from coma status to a minimally conscious state. Still, Alfred continued to ask questions about his wife's prognosis and chances for meaningful recovery.

Between myself, Alfred, and his wife on an obtrusive hospital bed, the remaining space in my sardine-can-like residency continuity clinic room was filled up by the colloquially elephantine question. “So what do you think, doc? I'm looking for some closure here.”

I thought back to my days with Dr. DeLine. “Well,” I began, “even though she can't physically tell you, and she may never be able to, it is possible she can still feel your love. And that alone may be enough for her.”

He sighed, then he smiled as if a nagging gravitational pull finally set him free. “You're right. As long as she can feel my love, I think that will make her happy. My love made her happy before all this happened.”

There's no objective measure—no EEG, MRI, EMG or lumbar puncture that will show what quality of life a patient has. As neurologists, we tend to form our own definitions of what that might be for our patients and it tends to change in different circumstances. For Alfred, being able to express his love for his wife—and especially the possibility that she might receive it—was the vital factor in his perception of her quality of life. Alfred and I shared a reminder of what matters most in the human experience. This is perhaps the greatest wisdom realized through my residency thus far. Love has become my definition for quality of life.


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