Who Gets to Decide Who Deserves Care?

This question helped me discover the impacts of health disparities and start healing after losing my father.

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As I reflect on the loss of my father, who transitioned from this earth on October 18, 2021, the question that lingers in my mind is profound: Who gets to decide who deserves care and who does not? My father was not just a significant figure in my life; he meticulously prioritized his health and healthcare. I remember countless mornings with him, embarking on early gym sessions followed by doctor's appointments and errands. However, the stark transition from his vibrant, active lifestyle to a state where every vital organ faltered within days of hospital admission shed light on broader systemic issues at play.

While his death certificate cites multi-organ system failure, acute liver failure, and hemophagocytic lymphohistiocytosis as causes, there is little doubt in my heart that health disparities played a pivotal role. As Kinsey (2022) poignantly notes in "Decolonizing Wellness," the marginalization of individuals contributes significantly more to health disparities than their individual choices. Despite this reality, there persists a tendency to blame individuals rather than confront systemic shortcomings.

This ingrained narrative denies equitable, life-saving care to patients like my father. His doctors, quick to attribute his ailments to lifestyle choices, dismissed the possibility of an organ transplant outright. Despite his adherence to a standard American diet and moderate alcohol consumption, these factors should never have been equated with a death sentence. His doctors' failure to explore every avenue for his care underscores a systemic issue deeply entrenched in our healthcare system.

My father's passing serves as a poignant reminder that healthcare disparities cannot be solely attributed to individual choices but are symptomatic of broader systemic issues. These systemic issues disproportionately affect historically marginalized communities. Here are three of the most common:

#1: Socioeconomic Status

Research consistently highlights the profound impact of socioeconomic status on health outcomes (Tylka et al., 2014). Limited access to resources such as nutritious food, safe housing, and quality education perpetuates health disparities, creating a vicious cycle of inequality. Even individuals with higher socioeconomic status, like my father—a retired Army veteran with disability compensation and homeownership—are not immune to these disparities. Intersectional forms of oppression can amplify barriers to equitable care, transcending economic privilege.

#2: Access to Healthcare

Historically marginalized groups face formidable barriers to accessing healthcare, including lack of insurance coverage, exorbitant costs, and discrimination by healthcare providers (Cerezo et al., 2023). Structural barriers impede timely medical attention, exacerbating health disparities and contributing to disparate healthcare outcomes. However, more than mere access to healthcare is needed to guarantee quality care. Subpar healthcare services, as my father experienced, create additional barriers and deepen existing disparities.

#3: Historical Injustice

The shadows of historical injustices—from the legacy of enslavement to the exploitation of Black bodies for medical experimentation—loom large over healthcare. Events like the U.S. Public Health Service's Untreated Syphilis Study at Tuskegee epitomize the exploitation and mistreatment of marginalized communities (Muvuka et al., 2020). Deep-seated mistrust stemming from these injustices leads to delays in seeking care and dismissals by healthcare providers. My father's experience of being sent home despite his deteriorating health echoes this systemic betrayal, leaving unanswered questions about the role of delayed care in his untimely demise.

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Dad and I grabbing lunch in between running errands.

Losing my father has been an indescribably challenging journey, but it has ignited a sincere commitment to confronting systemic issues head-on. True transformation necessitates collective action, empathy, and advocacy. Equipping healthcare providers with the tools and knowledge to deliver equitable care can improve the healthcare landscape.

Nevertheless, this journey requires allies, advocates, and champions of change. Together, we can challenge the status quo, dismantle barriers, and forge a future where healthcare is truly equitable for all.

Join me in this pursuit of health equity. If you haven’t already, subscribe to my Substack to stay informed, engaged, and empowered. Together, we can make a difference—one step, one story, one life at a time.

Reference

Cerezo, A., Ching, S., & Ramirez, A. (2023). Healthcare Access and Health-Related Cultural Norms in a Community Sample of Black and Latinx Sexual Minority Gender Expansive Women, Journal of Homosexuality, 70(5), 782-805.

Kinsey, D. (2022). Decolonizing wellness: A QTBIPOC-centered guide to escape the diet trap, heal your self-image, and achieve body liberation. BenBella Books.

Muvuka, B., Combs, R. M., Ayangeakaa, S. D., Ali, N. M., Wendel, M. L., & Jackson, T. (2020). Health Literacy in African-American Communities: Barriers and Strategies. Health Literacy Research and Practice, 4(3), e138–e143.

Tylka, T.L., Annunziato, R.A., Burgard, D., Daníelsdóttir, S., Shuman, E., Davis, C., & Calogero, R.M. (2014). The weight-inclusive versus weight-normative approach to health: Evaluating the evidence for prioritizing well-being over weight loss. Journal of Obesity, 2014, 1-18.