What if CRT Enters the Health Equity Conversation? Part 4

Proposition 4: Centering the narratives of people who have experienced racism is necessary for justice.?

We have been reviewing some of the propositions made by Critical Race Theory and their intersections with health equity. You can click on the numbers to read Parts 1, 2, and 3.

Proposition 4, Centering the narratives of people who have experienced racism is necessary for justice, asserts that to achieve justice for people of color we must understand racism and its implications from the perspective of those who have experienced it.

The proposition also calls on society to challenge the racism narratives it has learned because the story of racism and its impact has primarily been told by individuals outside that experience. This fact is poignantly noted by historian Donald Yacovone (Hutchins Center for African & African American Research, Harvard University) who analyzed over 200 US history books published between 1832 and present day and looked at how these books presented stories about Black people in America.

Yacovone found that first-person stories relating the experiences of Black people in the US were systematically excluded from history books, noting that even though there was a significant legacy of African American writing about the experiences of slavery and freedom, such narratives were not accepted as legitimate by existing White power structures and "They dismissed the slave narratives as propaganda, downplayed the history of Africans before slavery, and ignored the work of African American scholars such as W.E.B. Du Bois and others." (Yacovone, 2020).

As a result, the narratives about slavery, racism, and Black lives that have been internalized by the American psyche generally exclude the perspective of those at the center of such experiences. This void easily results in inaccuracies, selective story-telling, and the shaping of histories to make them emotionally and socially palatable and convenient for the dominant culture. Emotional and social palatability provide individuals whose histories do not place them at the center of slavery, racism, or discrimination with a sense of detachment from these wrongs, minimizing their impact, sometimes to such a degree that they will even argue, alongside George Fitzbugh, that slavery was beneficial.

Our society must reckon with the systematic obstruction of first-person stories about slavery, racism, and Black life. We must make things right by dismantling inaccurate histories and replacing them with the realities of slavery, racism and discrimination as told from the perspective of people at the center of those experiences. Such reckoning demands humility from the dominant culture. It requires the relinquishing of power over current narratives and it requires vulnerability and openness.

Returning control over histories to those with relevant lived experience is necessary for true understanding and justice to prevail. This is a lesson healthcare has been learning since it began to move away from medical paternalism to a model that honors patient autonomy.

Intersections With Health Equity

Healthcare has been on a journey to embrace first-person stories and center caregiving work around the experiences of those seeking services by using patient/person-centered care. The concept was introduced by Carl R. Rogers in the 1940's. Rogers, a psychology professor at Columbia University proposed that patients have the capacity to understand the aspects of their lives that cause them pain and saw the role of therapists as simply holding space for patients to use their capacity to self-direct towards wellness.

In 1978, medical anthropologist Dr. Arthur Kleinman furthered the idea when he published his seminal work Culture, illness, and care: clinical lessons from anthropologic and cross-cultural research (1978). Kleinman's research found that when individuals seek medical care, there are significant discrepancies between their explanatory model (what the patient believes and understands about their situation) and the physician's explanatory model. Kleinman found that patients view their illness through the lens of their lived experience and are concerned with things like how an illness may impact personal relationships or cause financial distress. Providers, on the other hand, approach care from a biomedical perspective, focusing on the pathophysiology of the disease and on medical treatment modalities. This discrepancy resulted in patients feeling invisible, dismissed, and demeaned, leading to a breakdown in communication between patients and providers. To address this, Kleinman developed a list of 8 questions that providers could use to elicit the patient's explanatory model.

While Kleinman's 8 Questions are still in use, it must be understood that eliciting the patient's explanatory model is only the first step towards person-centered care. Once aware of the patient's beliefs and understanding about their health situation, providers must practice cultural humility and view the patient's explanatory model as expertise. The patient is the expert on themselves. Only the patient can shed light on how medical knowledge, judgment, and recommendations fit into their particular situation and lived experience.

Since the goal of patient care is to make a specific individual well, it follows that care decisions must be made based on the unique knowledge the patient has about their particular circumstances. Without person-centered care the patient lacks engagement and will have difficulty following their plan of care (PCORI). Person-centered care is key to positive health outcomes. Care that does not incorporate the patient's perspective is not accurate, is not quality care, and it is not safe.

When doing health equity work we desire to understand care experiences from the perspective of those who have been systematically oppressed and discriminated against. We request first-person narratives from those whose health is impacted by care disparities simply because of their social identity. Those requests for first-person perspectives sometimes result in accusations that we are promoting CRT. The fact is that CRT's proposition to center the narratives of people who have experienced racism and discrimination aligns with the healthcare journey towards person-centered care which views lived experience as expertise.

Asking oppressed populations to share their healthcare experiences so we can center our health equity efforts around their first-person narratives is an extension of person-centered care.

To provide effective person-centered care healthcare systems must be intentional about dismantling the power imbalance that is characteristic of the patient-provider relationship. Providers must surrender control over the care work and enter into a collaborative relationship with their patients that places the patient's lived experiences at the center of decision-making.

Healthcare systems have a moral duty to challenge the narratives they are using to provide care to members of underrepresented communities and ensure these populations are receiving services that are centered around their first-person narratives. We must courageously deconstruct any false or convenient narratives about how communities of color and other underserved groups experience care and create space for their voices to lead care work in truth and authenticity. Compassion and Justice demand it. Only then will we see true health equity- the achievement of optimal health outcomes among all communities.

Organizations seeking to advance health equity will do well to lean on health equity consultants with expertise and lived experience as they engage nurses, providers, community members, and all people of good will in this work.

References:

Rogers, C.R. (1942).?Counseling and psychotherapy: Newer concepts in practice.?Boston: Houghton Mifflin Company.

Yacovone, D. (2022). Teaching White Supremacy: America's Democratic Ordeal and the Forging of Our National Identity (First edition.). Pantheon Books.

The Association for the Development of Person Centered Care (2004). The History Of The Person-Centered Approach. Retrieved from https://adpca.org/the-history-of-the-pca/