Background    More than 11 million immigrants reside in the US without proper legal authorization (are “undocumented”). The undocumented patient population has limited access to health care including appropriate end-of-life care. Common barriers include lack of familiarity with the US health care system, lack of health insurance, poverty, limited social support, fear of deportation, and language/communication barriers (1-4). While some of these barriers may be complex and challenging to alleviate there is a lot that could be done to help this patient population. This Fast Fact offers care approaches that may improve end-of-life care for undocumented immigrants.

General considerations for all immigrants    Clinicians should approach cross-cultural clinical interactions with cultural humility (see Fast Fact #154). Interprofessional collaboration with social workers and chaplains to help fully assess patient and family disease understanding, material and community resources, social support, and emotional and spiritual needs is critical.

Specific considerations for undocumented immigrants     

• Fear of arrest and deportation leading to a hesitancy to seek medical care is prevalent in the undocumented patient population. Provide education to the patient and family about the patient’s rights to seek medical care and to non-disclosure of their immigration status, which is protected by the Health Insurance Portability and Accountability Act (HIPAA) of 1996.  Addressing and validating patient fears can promote the development of a trusting patient-clinician relationship.
• Access to family support is crucial for a patient nearing the end-of-life. Some undocumented patients do not have adequate family or social support in the United States. As they progress through their serious illness, some may require ongoing caregiver support to assist with medication access and administration, transportation, and help with activities of daily living, such as bathing, changing, etc. Collaborate with the interprofessional team to ask permission to reach out to family or friends who can support the patient. When possible, involve key family members in discussions about the patient’s health through any effective means of communication, such as by telephone or video chat.
• Do not assume your patient is uninsurable. Although most undocumented patients do not have access to health insurance, some may qualify for public insurance if eligible for immigration relief (5) or similar programs. For example, in New York State, some undocumented patients may qualify for Medicaid and other benefits under the Permanently Residing Under Color of Law (PRUCOL) category (6-7). Another example includes the Medi-Cal program in California, which offers health benefits for disadvantaged patients including undocumented immigrants. As of 2024, multiple states including California, Connecticut, Colorado, Illinois, Oregon, New York and more provide state-funded coverage or subsidies to immigrant adults regardless of immigration status (8). Coordinate with care management/financial counselors at your organization to explore potential options for your patients.
• Know your community charitable resources. It is critical to assess community resources available for undocumented patients. This can be achieved through collaboration with the interdisciplinary team when possible. For instance, many hospice organizations will provide charitable care to uninsured patients, including undocumented patients. It is important though to recognize that the charity care offered may vary widely depending on the hospice organization. Contacting several hospice agencies may help identify the one that can provide the most comprehensive care for your patient. Disease specific organizations, such as the American Cancer Society, may assist with financial support and medication access for patients irrespective of immigration status (9-10). Funeral homes also may offer special programs for low-income individuals including sliding-scale plans for burials or transferring the decedent back to their home country. Religious groups and mutual-aid networks are important resources that may provide financial support, housing, or practical help, such as assistance with transportation or companions in some communities.
• Engage in realistic prognosis discussions early.  While important for all patients, there are unique reasons that early, detailed, and explicit prognostic discussions are important for undocumented immigrants. Returning to their home country to spend their final days is of profound importance to many. Additionally, it can be time intensive to arrange for adequate caregiving in the US if someone is socially isolated, or to arrange visits from loved ones abroad before they die. This care planning should include any prognostic implications of leaving the US, if relevant. Those expressing a wish to return to their home country may face barriers, such as not having the financial means to arrange travel, concern for ability to tolerate travel including symptom burden, needing a travel companion, and access to medical care in their home country. Some patients may lack proper documentation for traveling, such as passports or valid identification documents. Early conversations about best and worst case scenarios including likely prognosis will allow time for exploring resources available based on the patient’s goals/wishes. Contacting the embassy/consulate of the patient’s home country may lead to provision of documents and financial assistance needed for travel (see Fast Fact #338).

References 

1. Metchnikoff C, Naughton G, Periyakoil VS. End-of-Life Care for Unauthorized Immigrants in the U.S. J Pain Symptom Manage. 2018;55(5):1400-1407. doi:10.1016/j.jpainsymman.2018.01.012.
2. Mendola A. Undocumented and at the end-of-life. Narrat Inq Bioeth. 2014;4(2):179-184. doi:10.1353/nib.2014.0033.
3. Jaramillo S, Hui D. End-of-life care for undocumented immigrants with advanced cancer: documenting the undocumented. J Pain Symptom Manage. 2016;51(4):784-788. doi:10.1016/j.jpainsymman.2015.11.009.
4. Blommel JG, Chacon AR, Bagatell SJ. The illness experience of an undocumented immigrant in the USA. BMJ Case Rep. 2018 Oct 14;2018:bcr2018225004. doi: 10.1136/bcr-2018-225004. PMID: 30323100; PMCID: PMC6194386.
5. Samra S, Taira BR, Pinheiro E, Trotzky-Sirr R, Schneberk T. Undocumented patients in the emergency department: challenges and opportunities. West J Emerg Med. 2019 Aug 12;20(5):791-798. doi: 10.5811/westjem.2019.7.41489. PMID: 31539336; PMCID: PMC6754205.
6. Nuila R. Home: palliation for dying undocumented immigrants. N Engl J Med. 2012;366(22):2047-2048. doi:10.1056/NEJMp1201768.
7. Sullivan, Margaret M. 2019. Learning How to Support and Improve Healthcare Delivery to Immigrant Patients at Health Centers in Massachusetts. Doctoral dissertation, Harvard T.H. Chan School of Public Health. Accessed Sept 18, 2024.
8. Key Facts on Health Coverage of Immigrants. Kaiser Family Foundation. Available at: https://www.kff.org/racial-equity-and-health-policy/fact-sheet/key-facts-on-health-coverage-of-immigrants/. Published September 17, 2023. Accessed Oct 1, 2024.
9. Seto Nielsen L, Goldstein Z, Leung D, Lee C, Buick C. A Scoping review of undocumented immigrants and palliative care: implications for the canadian Context. J Immigr Minor Health. 2019;21(6):1394-1405. doi:10.1007/s10903-019-00882-w.
10. Gray NA, Boucher NA, Cervantes L, Berlinger N, Smith SK, Johnson KS. Hospice access and scope of services for undocumented immigrants: a clinician survey. J Palliat Med. 2021;24(8):1167-1173. doi:10.1089/jpm.2020.0547.

Authors’ Affiliations: Stony Brook School of Medicine, Stony Brook, NY. 
Version History:  First electronically published in November 2024; originally edited by Drew A Rosielle MD.
Conflicts of Interests: None to report.