Recently at a morning meeting for our Palliative Care consult service, I heard a presentation of a young patient with very advanced illness who had been on a ventilator for a prolonged period in our ICU. The presentor did not share the race of the patient.
I asked if the patient was African American. The answer was “Yes, is that relevant?” And an intern shared that he was told by an African American faculty member at his medical school to never, ever share the race of a patient during a clinical presentation because it prompted so many assumptions about the patient by the clinical team that it would cloud clinical judgment. This issue also appeared in a recent opinion piece in the Annals of Internal Medicine. Does the race of a patient belong in the social history, physical exam, or in the introductory sentence? My position (and one that I hope sparks a discussion) is that in the field of hospice and palliative medicine, the race of the patient should be stated early in the clinical presentation. For African Americans who seek health care in the United States, race figures prominently in their interactions. Why should their race be buried in the social history?
I admit to being tentative on this point. I wonder if that African American faculty member at our intern’s medical school might also consider a more nuanced position. When I round with a person of color on my team (a too rare event in my state), African American patients look to them for reassurance, no matter how junior they are to me. Repeatedly when I tiptoe into the topic of race, with African American patients, I hear that the patient IS concerned that he or she is getting appropriate care—one person in her last hours, cited as evidence for her concern: the Tuskeegee-esque intentional infection of Guatemalans with syphilis. by North American researchers just revealed in the international press weeks before she was hospitalized.
To suggest that race is not a factor in the decision making of this young seriously ill African American patient would be naive. For people of color, race plays a role across economic class: professional colleagues describe dressing up for their doctors’ appointments—a measure that their European American counterparts would not think necessary.
Hospice and Palliative Medicine struggles to meet the needs of the African American community. More often than not, people die in African American community without the assistance of health care professionals who are trained in African American ethics, trained in health care disparities and we have not successfully recruited African American health care professionals to change this. Token members recruited to our health care teams will likely not change this—all members of the team will need to understand how white privilege is played every day and how African Americans might navigate health care differently. (One of the valuable comments from the Undoing Racism workshops came from Ron: “Nothing wrong with white privilege. We just think everyone should have it”).
African Americans in the health care setting might have an internal conversation about how they are being perceived, or they might have concerns about whether they are getting the optimal care or experimental care.
So… this African American patient with a prolonged ICU stay and her family might have very specialized needs, ones that take trust-building, listening, hearing the family sources of strength, and respect for differences in end of life preferences from their health care providers. I am thinking that naming race could bring an intentional compassion and respect that helps meet patients where they are-a principle that we champion in Palliative Medicine.
Read more in the book Americanah by Chimamanda Adiche, a novel that captures race in America from the perspective of a Nigerian émigré, Ifemelu (a blogger who inspired me to write about this). Chillingly insightful.