ataleof2halves

[ataleof2halves]

Love is the Definition

“You were one of the only positive ones,” he 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 was pretty grim.”

Allen’s wife lay still on her stretcher; her thin frame, her short black hair, her eyes spontaneously darting around the room, her right arm fixed in a fixed 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.

Allen was referring to one of my first call nights as a fresh neurology resident coming off of my intern year. 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 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 hemi-craniectomy and clipped her posterior communicating artery aneurysm.

On my call night, I was called 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. She likely had a combination of uncal herniation and anoxic brain injury. 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 Allen that at the time though.

While his wife was an inpatient, Allen was there next to her every day. He’d sit patiently, holding her hand at the bedside. Doctors entered and exited the room with haste to avoid the tough questions. Allen wanted to know if and when his wife would get better, and what the best possible scenario was. He wanted to get 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 worked with an experienced pediatric neurologist who treated severely debilitated children of all ages on a daily basis. It was heart-wrenching to see so many young patients who would never experience the common pleasures of life like 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. It was clear in my attending’s tone that she had tested her criteria on numerous cases throughout her illustrious career. Since then, I have yet to learn a better measure for quality of life.

Allen 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 will grieve but the love of Allen’s wife went from normal to comatose and it left him unsure of what to do with himself. Allen was lost in space and it felt like my obligation to bring him back to earth. I tried to tell him to try to get back to work and to try to spend more time with his children but he was concerned that his wife would not receive adequate care without him around. Allen told me 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 towed the line between minimizing his expectations and avoiding saying anything that I did not know to be true.

In her current state, Allen’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, Allen was persistent in asking questions about his wife’s prognosis and chances for meaningful recovery.

“So what do you think, doc? I’m looking for some closure here.”

I took a brief moment to think about how to answer him. “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; there’s 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 Allen, 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. Allen 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.

[ataleof2halves]

If the human brain were so simple that we could understand it, we would be so simple that we couldn’t.

Emerson M. Pugh, As quoted in The Biological Origin of Human Values (via mindblowingscience)