End-of-Life Care for Undocumented Immigrants With Advanced Cancer: Documenting the Undocumented

Abstract

There are approximately 11.1 million undocumented immigrants in the United States, with a majority being Latino. Cancer is now the leading cause of death in Latinos. There is little research guiding providers on how to deliver optimal end-of-life care in this population. We describe a case of an undocumented Latino patient with advanced cancer, and provide a review of the literature on end-of-life care in undocumented immigrants. Our patient encountered many challenges as he navigated through the healthcare system in the last months of life. These included delayed diagnosis, limited social support, financial issues, fear of deportation, and language and cultural barriers, which resulted in significant physical and psychological distress. Within the undocumented patient population, there is often a lack of advance care planning, prognostic understanding, mistrust, religious practices, and cultural beliefs that may affect decision making. Given the growing number of undocumented immigrants in the United States, it is important for clinicians and policy makers to have a better understanding of the issues surrounding end-of-life care for undocumented immigrants, and work together to improve the quality of life and quality of end-of-life care for these disadvantaged individuals.

End-of-Life Care for Unauthorized Immigrants in the U.S.

“…This is due to financial hardship, limited social support, and overall mistrust of the U.S. health care system. 11 Trepidation also plays a prominent role, including the fear of deportation, discrimination, and incarceration. 11 Approximately 47% of unauthorized immigrants between 25 and 64 years of age have less than a high school level of education, compared to the significantly lower 8% of the native-born U.S. population.…”

“…11 Trepidation also plays a prominent role, including the fear of deportation, discrimination, and incarceration. 11 Approximately 47% of unauthorized immigrants between 25 and 64 years of age have less than a high school level of education, compared to the significantly lower 8% of the native-born U.S. population. 9 A majority of U.S. unauthorized Latino immigrants only speak Spanish, and less than a quarter acknowledged being fluent in English.…”

“…12 Patients with limited English proficiency often struggle to learn about potential resources and other support services, which results in a constrained ability to make well-informed personal health care decisions. 11 Many unauthorized immigrant patients seek care only at the time of a disease crisis, when these diseases may be in an advanced and potentially terminal stage that leads to poorer health care outcomes.…”

“…13e15 Similarly, decisions related to resuscitation or to withhold or withdraw life support are frequently made by the hospital's health care team instead of by the patient or their family. 11,37,38 Combined, all of these factors lead to poorer overall health care outcomes for seriously ill unauthorized immigrants, including lower quality end-of-life care. 11…”

‘Managing scarcity’– a qualitative study on volunteer-based healthcare for chronically ill, uninsured migrants in Berlin, Germany

“…Research on uninsured migrants with oncological diseases is scarce. Few case reports from the USA describe the practical and ethical difficulties in end-of-life care for undocumented cancer patients: access limited to acute crises, inaccessibility of hospices and lack of advanced care planning 37–39. A retrospective analysis of data from a US safety net hospital showed undocumented Hispanic women with breast cancer presenting at a younger age and with more advanced stages of disease.…”