It had been raining all week. The soggy gray weather had shrouded the city in a wet blanket of haze. Today, the sun was actually shining. I got a glimpse of a crisp San Francisco morning through the window of Mr. W’s new room.
Earlier that morning, I had walked into his old room. As I made my way to this room, half-stumbling through early morning sleepiness, I looked in the corner, where he usually lay. I was surprised to find an empty bed covered in freshly laundered white sheets. I searched the room, identifying the three other patients, only to realize Mr. W was not in the room.
I turned my attention to the sitter, who was staring at me from behind a computer in the middle of the room.
“They moved Mr. W’s body to Room 10,” she said.
***
Mr. W had died earlier that morning. I still hear the words echoing in my head as I sat and listened to our resident dictate the discharge/death note, “he expired at 5:50 AM.”
I had been following Mr. W through the later course of his illness during the last week. I never directly spoke to him; I made use of translator phone, which connected me remotely to an interpreter, who echoed my questions in Cantonese.
This 84 year-old man had been admitted to the Neurology service two weeks ago after he had been found unresponsive in his bathroom. The CT would later show that he had suffered a right-sided stroke after a major artery (middle cerebral artery) had been acutely occluded. As a result of the ischemia and subsequent brain damage, he was left with a left-sided paralysis and facial droop; he neglected his left side and preferred to look at his right.
Even before his stroke, his days had been numbered. He had advanced lung cancer with metastasis to his liver and bones.
He was initially observed in the ICU and later transferred to our ward team. When he first came out of the ICU, he was coherent, answering our questions, verbalizing his complaints and actively trying to move his flaccid left arm, using his good arm.
Initially, he was set on participating in acute rehab, despite the intensity. His family remained committed to recovery and even interested in continuing his chemotherapy for his lung cancer. But within a couple of days, his health started to decline.
***
Mr. W finally got his own room with a window that overlooked a busy SF highway. As the cars buzzed by, the stillness in Mr. W’s room could be palpated. A big red sign that said “Caution, Fall Risk” hung over his bed. I could not help but note the irony in a note that hung over the body of a dead man.
His mouth was still open, as though he was gasping for air. His two large brown front teeth and a row of overcrowded bottom teeth were visible. His face had a yellow hue and his eyes were closed. His frail body looked stiff. A name tag was tied around his big right toe and a large white bag was folded below his feet.
I walked up to his body. I lay my hand on his right side; his skin was still moist and slightly warm. I stood there alone, lamenting his death—wondering about how he suffered while he gasped for his last breaths. I closed my eyes and prayed he would find the peace he had been denied during the last days of his life. And I said good bye.
***
In the week that I took care of Mr. W, I had become familiar with his neurologic exam. He could not move the left side of his body and did not even withdraw from painful stimuli. He had a left facial droop and looked to the right. Initially, he was alert and oriented and would follow commands.
Sadly, during the last week of his life, I watched him decline, becoming more delirious and agitated. He became hypoxic and required more oxygen to be comfortable. Because he was at risk for aspirating the food he ingested, he required a feeding tube, which was placed in his nose. He had to be restrained because he tried to pull out the plastic tube. And he was flailing his right leg and tugging at his restraints to be freed. A shrill moan was audible from the hallway anytime you passed by his room.
He was miserable.
Each morning, I could hear him groaning. And each day his mental status declined. He went from verbalizing his complaints, to responding to yes/no questions, to becoming completely unresponsive and only communicating with mumbling. The translator could not make out his responses. He needed a diaper because of his incontinence and would swat me when I examined him.
He lay in a room surrounded by three other patients; a sitter sat in the middle of the room. When I watched him flailing his leg and restrained arm, which was contained in a large white mitten tied to the bed, I felt pity for this man. It was undignified to keep him tied down during the last days of life. He was suffering and a part of me wanted to tell his family, he was better off at home surrounded by his loved ones instead of being surrounded by strangers in an impersonal hospital room tied down.
But his family could not make the decision we (the neurologists) felt was in the best interests of the patient.
***
Doctors are not very good at prognosticating, especially when it comes to predicting someone’s life expectancy. Thus, lifespan is presented in ranges—days to weeks, weeks to months, and months to years.
We gave Mr. W weeks to live. His death did not come as a total surprise. The writing was on the wall from the day he came out of the ICU. We (the neurologists) could all could see it, but the family did not. He was not a good candidate for acute rehab due to his weakness. And when his health started to decline, we all knew he would be better served by comfort measures.
Despite the inevitable, we were not able to communicate our expectations to the daughter early in the course of his hospitalization. The daughter, who was charged with making medical decisions, initially insisted on acute rehab and chemotherapy because she did not realize his days were numbered.
We did not discuss goals of care until after Mr. W had become restrained and started to decompensate. It was only after he had repeatedly expressed- “please let me die. Please let me die,” that we consulted the palliative care service.
Even when we presented the options relating to removing life-sustaining measures to the daughter, she could not make the decision we all wanted her to make—she could not withdraw care. And wanted to suspend making a decision.
***
At the end of life, we place a large burden on the families of our patients. We look to the families to make decisions with limited information because we expect the families to know what the patient would have wanted. As easy as it is for us to make our recommendations, we do not have to live with the consequences of such decisions. I can only imagine the anxiety Mr. W’s daughter faced, when she had to make the final decision about Mr. W’s end of life care.
We ended up agreeing on comfort measures, such as Haldol to help the agitation and morphine for pain. But his feeding tube remained in place and he still had to be restrained. He continued to groan.
In the end, Mr. W died of respiratory compromise, gasping for air.
***
When I left the hospital, I felt a heaviness inside me, feelings of guilt and sadness. I wondered what I could have done differently to help Mr. W in the last days of life. I respect the family’s wishes and only wish we could have included Mr. W in the discussion earlier to better understand what his wishes were. I kept replaying the conversations we should have had with the patient and family.
But in the end, I realized that we sometimes just need to accept death as it comes, even if it does not meet our criteria for a dignified/comfortable death. These are the things we do not control.
As I drove away, the rain started again.
***
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