Why did Mrs. X Die? Multi-Level Influences on Health and Healthcare among a Refugee Woman following Resettlement in Tarrant County

Purpose Hepatitis B virus infection (HBV) is a significant global health problem. Two billion people around the world have contracted the disease, and almost four million cases are a part of the refugee population. Although screening is mandatory before and after resettlement in the U.S., HBV status can still go undetected. There are several challenges working against the refugee population when it comes to health that result in increasing rates of HBV-related morbidity and mortality. The present study examines the case of a refugee woman who died from liver cancer less than four years after resettlement in Tarrant County. The case study illustrates how multi-level influences prevented her from receiving adequate and timely care. Methods The patient's medical records, UNTHSC Building Bridges Initiative’s case files, and medical case management files were reviewed for the study. The Building Bridges Initiative (BBI) is a UNTHSC program funded by the Cancer Prevention and Research Institute of Texas (CPRIT). The program uses lay health educators from the refugee community to conduct free educational workshops, health screenings, and connect medical case management to the community. Results Analysis of the patient’s records revealed missed opportunities to address the patient’s liver cancer and HBV status. Upon initial entry into the medical system, the patient had a 7.3 cm mass in her liver and tested positive for Hepatitis B. Despite subsequent appointments and numerous visits to the E.R. for abdomen pain, two years passed before doctors addressed the mass again. At this time, she was near the end of her pregnancy and the mass had grown. Following pregnancy, a surgery was scheduled. Lack of insurance and community members advising the patient against chemotherapy may have impacted her decision to miss multiple oncology consultations and follow-up appointments after the surgery. She enrolled in BBI four months before she passed way. In those months, she attended Hepatitis B educational sessions which helped bring her into care again. She then agreed to chemotherapy for comfort, and started palliative care. Conclusion Each source of evidence provided a unique perspective to the experience of Mrs. X in the U.S. health system. Though records supported a gap in the health care system, the case also revealed a possible lack of understanding of the severity of the illness, or the patient’s inability to advocate for herself in the system. Had BBI, or similar advocacy and navigation services, been in place and accessed at the time of initial diagnosis, perhaps the outcome might have been different for Mrs. X. In this case, medical case management was necessary to navigate the health care system, improve Mrs. X’s understanding of her condition, and improve communication between Mrs. X and the system. Without personnel to advocate on their behalf, refugees like Mrs. X get lost in the health care system.