My patient would never breathe on his own again, but he didn’t know it yet. Years of smoking landed him in our emergency room several times a month. Now the only thing lying between him and the grave was a breathing machine.
As his I.C.U. doctor, I had done everything possible to liberate him from the ventilator. Nothing had worked. Whenever we turned down the breathing machine to see if he could breathe on his own, his eyes widened in panic until we turned it up again.
At two weeks, with no progress made, it was time to talk about a tracheostomy tube. This tube, surgically implanted just below the Adam’s apple, creates a secure connection between patient and machine. Given the condition of his lungs, he would probably spend the rest of his life in a facility, attached to a breathing machine, his arms tied down to prevent the tube from dislodging.
My patient had a choice. We could remove the tube, allowing him to die naturally within a day or two. Or we could surgically attach him to the machine that would become his tomb.
The patient and his son were shocked. They knew he was sick, but not this sick. Now they faced one of the hardest decisions I could imagine. Would he agree to live this way or would he prefer to choose the moment of his death?
As my patient looked on, muted by the breathing tube snaking through his mouth, his son described him as the patriarch of a large family and a leader in Newark’s African-American community. He spent his days at a cafe playing cards with friends. Life on a machine would be very different.
The patient’s worried look turned melancholy as he realized his predicament. He shook his head in defiance. He wouldn’t take the risk of being trapped in the life I had described. Fighting the feeling that I had failed him, I held my patient’s hand as he wept. Then I rose to go and arrange to do what he has asked.
“Doc,” said his son, when I reached the door, “can I have a quick second outside?”
“Of course,” I said. We stepped out of the room.
Avoiding my eyes, he asked: “Are you sure you’re not doing this to save money?”
I was horrified. I strive to deliver the best care I can to each of my patients, regardless of the cost. I thought they trusted me to have the patient’s preferences in the front of my mind.
Maybe, in an ideal world. But not in the world we live in.
People of color have suffered from health care disparities over the whole history of our nation, usually in the form of lack of access or undertreatment. A 2017 study found that in New York City, African-Americans were significantly underrepresented in the best hospitals, even after controlling for insurance coverage.
African-Americans, including children, are more often undertreated for pain compared with their white counterparts. While 74 percent of white patients with bone fractures in an Atlanta emergency room received pain medications, 57 percent of African-Americans did. African-American children with an appendicitis were 44 percent as likely to receive opioid medications for pain, a cornerstone of care, as white children. Such inequities, the manifestations of implicit bias and institutional racism, are only the tip of the iceberg.
But there is a sadly ironic twist when it comes to disparities in dying. Although African-Americans are deprived of proper treatment for much of their lives, at the end they suffer from too much of it. They are more likely than white people to die attached to machines, their deaths stretched out, their suffering prolonged.
Why is this? Like so many difficult problems in medicine, it’s complicated, and of course it varies from case to case. As a white physician who cares primarily for African-American patients in Oakland, I have noticed two recurring themes in my work. On the patient side, there is often powerful distrust of the health care system, a fear that we doctors — who are mostly white — will deprive them in their time of need. On my side, there is my own guilt, my fear of being perceived as racist or somehow embodying an oppression I am often blind to. When these factors collide, doing more can be a temporary salve.
When my patient’s son questioned my motives, my first instinct was to backpedal, to persuade him that I wasn’t trying to kill his father. I wanted to say, “Why don’t we just err on the side of putting in the trach and keeping him alive?”
But then I caught myself, remembering what his father had asked for. “I understand why you are asking,” I said. “Please believe me when I say I just want to get your father the care that he wants.” With this reassurance, he sighed, thanked me and walked back into the room.
We disconnected the ventilator that afternoon. My patient died peacefully, his son singing beside him.
Despite my best intentions, when I walk into a patient’s room with my white skin and my white coat, I enter into a dynamic that is much larger than me. I often sense that my African-American patients and their families see me more as a gatekeeper than a caregiver. I want to be only the latter.
There are steps that white doctors like me can take to change this dynamic. One strategy is to work in partnership with other members of the hospital staff. It is an entirely different experience for me to enter a patient’s room accompanied by the African-American chaplain on our palliative care team, the Rev. Betty Clark.
Betty and I recently visited a woman who had just been given a terminal diagnosis. She lay quietly in the bed, avoiding my eyes as she clutched the hem of her blanket.
“Hey girl, how you doing?” Betty said. The patient smiled and the worry lines on her face relaxed. I sat on the side of my patient’s bed as she received Betty’s trademark hug. She had heard of Betty’s church, and they began to talk about people they both knew. With trust established, the patient looked at me and smiled. Holding Betty’s hand, she nodded when I asked if she’d like more information about her condition.
I was no longer just a white doctor with frightening news and a worrying agenda, but an ally. Betty had built the bridge, and I could cross over.
Prayer can also be a bridge. Most of my African-American patients are people of faith. I used to step out of the room after discussing their medical situation, in order to “give privacy” to the patient and the family as they prayed. But Betty began inviting me to stay. I quickly came to see how much this mattered to my patients and also to me. The sense of human connection around the bed reminded me of the reasons I went into medicine in the first place: to connect with other human beings, to support their needs and to offer the best care I can.
Doctors must do a far better job of caring for African-American patients from birth all the way to death. There is so much we have to do, but a good first step would be to stay in the room and face our discomfort, instead of running away from it.