An Excerpt From My Book: Extreme Measures
We have arrived at a moment of potential change, one which our country can not afford to miss. Will we really pursue equity and justice for the black community, or will we slide back into the terrible status quo? In order to take this on in a real way, we must all confront our own roles in the systems that perpetuate injustice. And that certainly includes the healthcare system.
We white doctors must examine our beliefs about and interactions with our African American patients. We must try to see ourselves through a different lens than we typically do, one that is not always flattering. It’s time to change business as usual.
I am not a black author and my book is not centered on racial issues. However, I hope that these few stories can help my white colleagues examine their own place in this system– just as these experiences have helped me begin to do the same.
Where We Come From
He was sixty-five, with the most beautiful dreadlocks I’d ever seen. Even though he was strapped into an ICU bed, breathing through a tube that tunneled through his mouth, he looked almost regal. His dreads were arranged gloriously in a silver gray cascade on his pillow. His son sat next to him in the room, the curator of this presentation. He’d been there night and day, holding his father’s hand and channeling strength into his failing body. “Come on, man, breathe,” he would say with urgency to his father. But each time we had attempted to wean our patient off the breathing machine, he quickly tired out. Now we were approaching the two-week trach decision point.
I spent several hours with them over the next few days. The patient was intermittently awake, and not very communicative through all of the hardware. But despite this, there were occasional winks and friendly hand squeezes. His son told me about him, his family, his friends, his likes and dislikes. It turned out the patient was a real talker and would sit for hours with friends at the local cafe, playing chess, smoking, and drinking coffee. His son told me that he couldn’t imagine his father being alone, even for a few hours. I learned that he did not like doctors and hospitals, and missed most of his medical appointments. He had also told his son adamantly that he never wanted “to be cut.”
And so this man, who had entered the hospital with what I believed to be his last flare of emphysema, would probably never be able to resume the life he loved. This vibrant, social man, who liked nothing more than sitting at cafes and talking about life, could only continue living if he agreed to trach placement and permanent attachment to a breathing machine. He would probably never go home again. Or talk again. Maybe never eat anything by mouth. He would be alone much of the time in an LTAC, the rhythmic sounds of his breathing machine providing the new soundtrack to his life.
The choice was obvious to the man and his son. There would be no breathing machine, no prolonged stay in a nursing home. The temporary breathing tube would be removed and there would be no “cutting” for a trach. He would probably die that day or maybe the next. In an ideal world, the son said, he would want to bring his father home to die. At this, my patient opened his eyes, nodded, and squeezed his son’s hand. I told them that I couldn’t guarantee he would ever make it home, but we would do our best. And either way we would be aggressive about keeping him comfortable with excellent nursing and respiratory care, as well as medicines for shortness of breath or anxiety, should they occur. They understood. I sat with them for a few minutes longer, all of us quiet. But I had other patients to see. I rose slowly and touched their shoulders in a silent farewell. Then I moved toward the door.
The son rose. “Doc,” he said, “just one more thing. Can we step outside?”
We exited to the hall. He looked sheepish. “I know you’re trying to do your best for my dad,” he said, “but I need to ask you.”
“Of course,” I said.
“You sure you’re not doing this to save money?”
The question hit me in the gut, and at first I couldn’t find my words. I could see it was hard for him to ask. Over the past few days, we’d built a relationship of trust, and now it felt like we were back to ground zero. It seemed that my attempts to help them reach their decision to use less technology had raised the suspicion that I might be trying to deprive them of something helpful. Then I thought of my white skin. I took a deep breath and reminded myself that it wasn’t personal; it was instead the residue of generations of neglect and deprivation that African Americans have experienced at the hands of our medical system.
“I’m so sorry you had to ask that question,” I said, “but I understand why you did. I feel terrible that that thought would enter your mind right now. It doesn’t matter to me what choice
you make; it matters most that you do what feels right, and I want to help you do that.”
“Thank you,” he said, “I just needed to make sure. I trust you, doc.”
We took the tube out within the hour. The patient was kept comfortable, although his oxygen level began to drop quickly. He lived until the next day, when, holding his son’s hand, he took his last breath. I never saw the son again, but his question still haunts and saddens me these many years later.
Our nation’s history makes it almost inevitable that race plays a role in medicine. And once again, those who suffer the most are the racial minorities who have been chronically deprived.
My medical career has primarily been spent in Newark, New Jersey, and Oakland, California, working with underserved populations, largely African American. I am acutely aware of their difficult medical history in our country, which continues to this day—rampant health care disparities, a history of segregation and exclusion from health care, and abuse in the guise of science, as with the Tuskegee syphilis experiments. I am also acutely aware of my white skin, my different speech patterns, and the power dynamic, both real and perceived, in the relationship between a white doctor and a black patient. I am deeply committed to serving this population to the best of my abilities.
Research clearly demonstrates that African Americans tend to die differently from whites, receiving more aggressive treatment
without benefit at the end of life and experiencing more uncontrolled symptoms. They are also 40 percent more likely to die in a hospital than their white counterparts and much less likely to
enroll in hospice or complete Advance Directives.
In short, our traditionally deprived minority citizens are at the highest risk of overusing our invasive technologies in ways that may bring no benefit and will likely cause significant suffering. They die in more pain, on more machines, and more often away from their homes and loved ones. In almost every other arena, African Americans and other minorities of color have rarely gotten their fair share of the pie. And until relatively recently, this was the case with medicine too. But now, in a sad irony, with open access and autonomy run amok, they are getting more at this late stage of life than their white counterparts. And suffering mightily for it.
There are many explanations for why this might be so. The 2013 Pew Research study on end-of-life preferences demonstrates striking differences between races in attitudes regarding end-of-life decisions. Simply put, African Americans want more treatment than their white counterparts. In response to the question “Should medical staff do everything possible to save a patient’s life in all circumstances?” 20 percent of whites responded in the affirmative compared with 52 percent of blacks. Dr. Kimberly Johnson, an African American health care researcher at Duke University who led a session I attended at the American Academy of Hospice and Palliative Medicine (AAHPM) annual assembly, explained it this way in her presentation: “When whites were getting hospice and looking for alternatives in the sixties and seventies, blacks were just trying to get health care.” More seems better when compared to nothing. There are other factors too. As we know, less communication translates into worse care. There are many reasons why communication between a white doctor and a black patient, a common pairing, might be suboptimal.
An African American social worker once cautioned me against recommending the withholding of treatments to African American patients. She felt that this could polarize the conversation and erode trust. White doctors may sense this and be relatively quick to end the conversation about withdrawing or withholding treatments if they detect resistance. Or they may avoid bringing it up altogether. As for the patients, they may not trust information coming from a system to which they were long denied access—if they get that information at all. Whatever the reason, effective information transfer is not possible with communication that is broken, aborted, or never attempted in the first place.
My patient was an elderly African American woman with a bad heart. She’d been admitted with her fifth episode of fluid on the lungs in eight months, and her breathing had been touch and go for days. Finally, our medicines kicked in, and her sick kidneys began to release liters upon liters of urine, drying out her lungs enough that she was no longer in immediate danger of being intubated. But it was only a matter of time before another flare-up would bring her back to us, and I knew that a conversation about a breathing tube was way overdue.
I entered her room without a lot of time to spare. We were planning to discharge her from the ICU to the hospital floor later that day, and a room was in the process of being cleaned upstairs. The patient acknowledged me nervously and sat up a bit in the bed. Her daughter, usually present at our meetings, wasn’t due in until later, but I was afraid to miss the opportunity to have a goals-of-care discussion, which hadn’t happened so far.
I pulled up a chair and sat next to her. “I’m so glad you’re feeling better,” I said. “This must have been scary.” She nodded cautiously. Then I dove in. I began to talk about breathing machines. She had been intubated on her third admission, so there was a reference point. I explained that her heart failure was accelerating and that we might not be successful in getting her off the ventilator the next time she got intubated.
“Would you want us to put you on a breathing machine if our medicines couldn’t treat your breathing quickly enough?” I asked.
Her face closed up. She was leaning as far away from me as she could, back into the pillows. I couldn’t tell if she was angry or perhaps terrified. I asked what she was thinking but got no response. Was there dementia? Was she confused? She simply wouldn’t answer.
At that moment, I felt a gentle tap on my arm and turned around to see one of the social work interns, a young African American woman. She must have been standing behind me for a while. I felt a slight tug of concern. Had I somehow been culturally insensitive?
“Mind if I give it a try?” she asked quietly.
I stood up and gestured to my vacated seat. “Please,” I said.
She sat down next to my patient. Picking up her hand, she smiled at the elderly woman. There was no talking for several beats. The woman visibly relaxed, then smiled back.
“Miss Mabel,” the intern said in an admiring voice, “where did you get your hair done? It’s lovely!”
And they began to talk.
It would never have occurred to me to talk to my patient— this one or any other—about her hair. It wouldn’t have occurred to me to call her Miss Mabel. One might argue that the patient’s hesitation to talk to me had nothing to do with race, that she closed up because I was hurried and insensitive. But from then on, I began to notice how Chaplain Betty Clark and Reverend Donald Miller were addressing elderly African American patients, with a quiet calm and respectful deference that felt almost Southern in its cadence. I realized that I needed to slow down and set a different tone—something that has proven challenging for me, with my fast-paced, East Coast urgency. This was not something I’d ever learned in medical school. I realized that I’d likely been inadvertently offending my patients for years. I promised myself I would do everything I could to change my approach.
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Copyright © 2017 by Jessica Nutik Zitter, MD