Repenting for Healthcare Inequality

“Can you please help me?” The woman on the other end of the phone was crying. “I’m twenty-four weeks pregnant, and I’ve been having terrible headaches. I just don’t think this is normal, but I’ve called my doctor over and over and the nurse just tells me to drink more fluids. My appointment is not for another two weeks!” There was panic in her voice.

I was working as a case management nurse for maternal child health when I received the phone call. As I pulled up her file on the computer, I began asking the woman more about her symptoms. This was her first baby. The pregnancy seemed to be going fine, there was nothing on her record other than regular prenatal visits, but the headaches had begun two weeks before and she could not get relief. And then there were her swollen ankles.

As she relayed her symptoms to me, I began to panic. What she was describing is a series of symptoms that pointed to preeclampsia, a condition that, if not diagnosed and treated, can lead to serious complications for both a mother and her baby.

I urged her to go immediately to the nearest emergency room. If the doctor was unwilling to see her with those symptoms, she had best go to a place that would take what she said seriously. Meanwhile, I would call the emergency room and let them know what was happening and then call the doctor’s office and give them a solid and angry response to their careless oversight of this patient.

But I sighed as I hung up the phone. My patient was African American, and what she described was not an outlier. She described what I had discovered was a consistent pattern.

Unequal Treatment

In 2003, the Institute of Medicine released a report called “Unequal Treatment: Confronting Racial and Ethnic Disparities in Healthcare.” The report, by compiling hundreds of studies conducted across the nation, revealed a pattern of disparities based on patients’ race or ethnicity. At its core, the report detailed how racial and ethnic minorities receive lower quality of care even when their income and insurance status are the same as their white counterparts.

Prior to the report, many thought that the narrative of disparities verbalized by both patients and health professionals was just that – a narrative. Or they thought that it was about health care access. The conventional wisdom was that if you give a person health care access the disparities would go away. In fact, the report found this to be categorically false. The results were clear and staggering: Racial and ethnic minorities get poorer quality of health care then white people.

Receiving appropriate cancer treatment, pain control, mental health services, heart procedures, diabetes, pregnancy, and pediatric care – disparities in care existed in every one of these areas. Minority patients were more likely to be under-medicated than white patients, more likely to have the severity of their pain underestimated by physicians. In pediatric care, parents complained of poor communication and a perception that they were ignored when they voiced their concerns.

I discovered the report a few years before my patient’s phone call. I remember being horrified as I read it. How could this common pattern exist? How was it only coming to my attention after so many years of working as a nurse? What was being done about it? Moreover, what was I doing to change this in my own practice? What was my response as both a healthcare professional and a Christian?

The report detailed how racial and ethnic minorities receive lower quality of care even when their income and insurance status are the same as their white counterparts.

That report is now fifteen years old, but the insidious patterns that it discovered have not been corrected. In April, the New York Times Magazine addressed the crisis of African American mothers and babies. Beginning with a story much like the story of my patient, the article goes on to talk about the “lived experience” of black women as it relates to disparities in pregnancy outcomes. For over a century there has been ongoing concern and debate over the rates of infant mortality in black communities. The article invited stories from black women about their pregnancy and birth experiences, several of which were published a week later: “The psychological weight of three generations of Black women lives in my womb,” said one woman. Another talked about feeling like a “mute from Mars” as she tried to describe her symptoms to unresponsive health professionals. Degrees from Harvard or Princeton made no difference.

In each case, black women had symptoms that should have been addressed, and that would have been addressed had they been white.

Looking in the Mirror

I am a white woman and I work as a public health nurse in communities that we describe as “underserved”. These are largely communities of color. I did not grow up in this country, but was raised as a privileged white minority in Pakistan, a country that still had memories of British occupation, where whites ruled and were regularly sent to the head of the line. I could have remained oblivious of my privilege, except for parents who would have none of it. They were not given to spanking much, but the one spanking I did receive – one that stings to this day – was for sticking my tongue out at two Pakistanis. We were guests in that country, and while my parents may not have fully understood their host country, they loved Pakistan and its people.

Ignorance combined with privilege made me comfortable and complacent.

Despite that, I was deeply naïve about how much privilege I held, and I did not think about race – ever. Ignorance combined with privilege made me comfortable and complacent. It was only when I started to work as a nurse in public health with minority populations that I began to regularly confront issues of racism and unequal treatment in health care.

Suddenly I had to look in the mirror. Where was I unconsciously perpetrating these health inequities? Where was I oblivious to my own bias, my own lack of understanding of how race and ethnicity affected a person’s overall experience in life? How did that translate specifically into their experiences in the health care system where I worked? How could I be so comfortable in the face of such inequity?

Personal and Collective Repentance

I love being a nurse. I love the work I do, the people I meet, the projects that take me into immigrant and refugee communities. But in order to do this work well both as a professional and as a Christian, I have needed to repent. I have needed to repent of blindness in the face of such profound disparities, to repent of being weary of facing this, to repent of being defensive, to repent of my inner dialogue of “it’s not my fault.”

And I have needed to be bold about collective repentance. It is vitally important to face who I am; it is also important to speak up when I see things happening that are wrong and that could be causing harm to individual patients and entire communities.

The emergency room saw my patient that day and she was admitted to the hospital with a diagnosis of preeclampsia. We talked on the phone a few days later, and I was fortunate to be able to follow her case as her case manager right up until she delivered a beautiful baby girl. I rejoiced with her, even as I wept that black women like her face such difficulties like this all the time.

The treatment my patient received prior to calling me was wrong. The disparities that happen in health care historically have been wrong. The disparities that occur these many years later are still wrong. There is no other word for it. They are wrong and to move forward, an apology is in order.

I have needed to be bold about collective repentance.

And so, I want to apologize. It doesn’t matter that I was not one of the nurses involved in the New York Times Magazine article. It doesn’t matter that I was not one of the caregivers in any of the studies documented for Unequal Treatment. What matters is that I am part of a health care system that has routinely discriminated against people because of their color; a system that has treated people unequally based on their outward appearance, not their presenting symptoms. What matters is that I am a part of a system where black women are afraid of birth outcomes, are afraid that problems in pregnancy will not be heard and afraid that their voices are muted and their concerns dismissed.

In Notes from No Man’s Land, author Eula Biss talks about being a teacher at a public school in Harlem. A young boy, a foot taller than her, hissed at her in the hallway. As she sat in the principal’s office waiting while the principal went to “hunt him down,” another kid stepped into the office:

“I’m sorry I sexually harassed you.” I stared at him. He wasn’t the same kid. “But it wasn’t you.” I said finally. “Yeah,” he said as he pulled down his baseball cap and started to walk away, “but it might have been my cousin.”

Struck by this young man’s words, Biss, a white woman, recognizes her kinship to those who created and perpetuated slavery. Biss apologizes for slavery. Today, I apologize to the women whose birth stories are within the pages of a magazine. I apologize for Unequal Treatment. I apologize to my patient from that phone call.

Because no – it was not me – but it might have been my cousin.