Tag: marginalized communities

Dying to be Competent

“Dying to be Competent” details Cottam’s experience with healthcare discrepancies in her experience giving birth attributed to the fact that she’s a woman of color. Cottom describes having her physical pain be completely dismissed by healthcare professionals and claims that this resulted in the tragic consequence of her daughter dying shortly after birth. Through her personal story, Cottom illustrates the inequalities within healthcare due to structural racism, and the grave lack of care women of color too often receive. This essay could be used in classes to further investigate the structural forces within our society and how they are subsequently intertwined with healthcare as well as how it creates marginalization and lack of care within the healthcare system. Additionally it could be used to discuss the role of unconscious biases and stereotypes within the medical field.

Eight Lives – United Nations Population Fund

From the website: “UNFPA is the United Nations sexual and reproductive health agency. Our mission is to deliver a world where every pregnancy is wanted, every childbirth is safe and every young person’s potential is fulfilled. This publication, Eight Lives: Stories of Reproductive Health, relates the tales of eight women who have endured the challenges of poor reproductive health.” The anthology includes stories about breaking the cycle of female genital mutilation, family planning, HIV prevention, sexual violence, becoming a teen mother, maternal health, midwifery, and obstetric fistulas. “Each story gives a voice and a face to those most affected by the failures of a dysfunctional health system — and by gender inequality, violation of their human rights, blatant disregard for their social and cultural circumstances, and abject poverty.” This source could be utilized in a class focused on global perspectives on reproductive and sexual health. Discussion could be focused on marginalized communities within the healthcare system as well as differences between healthcare systems across countries.

Power With Anthology: Storytelling for Social Justice

From the website:

“POWER WITH is a collection of multimedia stories that uplift the lived experiences and perspectives of community members, patients, and health care workers and trainees. Specifically, POWER WITH spotlights how our experiences with oppressive (or “power over”) structures impact us individually, while also demonstrating that we are all connected through a greater shared human project. These stories inspire us to imagine what a system that embraces relationships and collective change (or “power with”) could look like.”

As of 10/25/23, some of the examples from the website were as follows:

1. “Ariah Tesema, a pre-med student, shares her journey of pursuing a career in medicine and embracing her multicultural identity. This begins with immigrating from Ethiopia to the United States as a young child and discovering that her multicultural life does not fit neatly into the boxes American society tries to place her in.”

2. “Andrea Morgan, a doctoral student at OHSU, shares her experience moving to Portland from Southern California and her dream to share her love of science with children who come from similar backgrounds.In addition to her studies, Andrea is leading a Racial Equity & Inclusion grant called Black Like Me 360, a project that allows viewers to see and hear in a first-person experience the day-to-day lives of Black Portlanders on campus and in the city in an art installation.”

3. “As a college student, Toren Ikea-Mario helped his father through a difficult cancer diagnosis and treatment. In the process, he realized that the healthcare system was broken, especially for people like his father, and was determined to be a part of the solution.”

What Does It Mean to Die?

“What Does It Mean to Die?,” an article written by Rachel Aviv, chronicles the conflict between the Winkfield family and the medical staff who declared Jahi Winkfield deceased from brain-death. After a tonsil removal surgery, Jahi began coughing up blood and bleeding from her nose profusely. Her mother, Nalilah, the principal interview throughout the article, described how her daughter was not receiving proper care, which Nalilah attributes to racial discrimination. After continued neglect in the ICU, Jahi’s heart stopped, and two days later, she was declared brain-dead. She was put on a ventilator, but in California, there is a limited amount of time a hospital will allow a patient to remain in care. Due to the malpractice that had already occurred in her daughter’s care before “death,” and religious bases, Nalilah argued for her daughter’s right to remain on the ventilar and be cared for. The article offers contextual information regarding California law and insights from bioethics experts, as well as working physicians. After deciding to move to New Jersey due to their laws regarding religious-based continuation of care laws. Aviv details the controversy that emerged from this case, especially from the interest of the press and the pushback from medical professionals. Jahi continued to receive care from nurses and remained on a ventilator. Nalilah, her family, and some medical professionals believe that Jahi still is not “dead;” Jahi has physical responses, menstruates, and has a lowered heart rate at the sound of her mother’s voice. These facts prove, for some, as evidence for her right to care. However, some argue that this could be a shared delusion in the family. Regardless, the article presents many perspectives that ask the audience to understand the situation from different sides, while still staying grounded in Jahi’s story and Nalilah’s fight for care.

This story could be used in discussions of modern-day bioethics, especially in discussion of continued discrimination of BIPOC patients and families. Furthermore, it could lead to a discussion about the right to care and how we define “death” in different contexts.

Reflective MedEd

The “About” section of this blog explains its purpose as follows: “Reflective MedEd is dedicated to reflective practice in medical education and care of the person. We publish contributions that offer insight and illumination into the experience of educating the next generation of physicians. We welcome the thoughts of educators, patients, and all who foster awareness of the human dimension of doctoring and develop advocates for the just and equitable treatment of all patients.” Especially welcome are submissions that address “social justice and a concern for marginalized and vulnerable populations, the role of faith in medical practice, and ethical standards of decision making.” Reflective MedEd is supported by the Ralph P. Leischner, Jr., MD, Department of Medical Education at Loyola University Chicago Stritch School of Medicine.

Blog posts include both personal narratives and reflective essays from a variety of experiences and perspectives. For example: “How COVID Impacted my First Patient and Patient Death Experience,” “What I have Learned About Trust from Black Women,” and “The Wolf: How skeptical should we be of our patients?”

How and Why Patients Made Long Covid

This article documents the central role of patient narratives in establishing “long haul COVID” as a phenomenon. The article explores how case studies, Tweets with a shared hash tag, and high profile news stories of individual patient experiences challenged conventional medical wisdom during the early period of COVID. The article also acknowledges that power differences in whose stories receive attention played a role in “long haul” being accepted. This is a brief article that could be assigned in conjunction with first-person narratives to explore how patient narratives are related to accepted medical knowledge, research agendas, and public health communication.

Patient & Family Storytelling: Real People. Real Experiences. Real Impact.

This Alberta Health Services website lists 107 videos from patients and their families. There is a brief description of each video (e.g., the health condition, who tells the story, what larger issue or point the story illustrates). It is possible to search the collection (e.g., for stories related to “cancer”). Some examples of health narratives on this website include:

Rose’s Story: Joy and Grief, a look into how healthcare providers can help us navigate tragedy and foster healing. Rose explores the impact and experience of the stillbirth of her son and daughter. (The website includes a content warning.)

B’s Story: Learning to B myself, a story about the challenges of occupational stress, gender identity, mental health, and transgender advocacy from a rural context.

Jeraldine’s Story: There is Hope, a story of the experiences of an Indigenous woman who experiences the ramifications of intergenerational trauma. This story advocated for Canada to provide culturally appropriate healthcare to indigenous populations.

Although produced by a health care system, these videos give more voice to patients and family members than is often the case with these kinds of collections. They are well-produced and many address the experiences of historically under-served and marginalized populations.