Caring for Undocumented Immigrant Patients at the End of Life #495

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 nondisclosure 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 these patients 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, dressing, feeding, etc. Collaborate with the interprofessional team to ask permission to reach out to family or friends who can support them. 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’s 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 Religious groups and mutual-aid networks are also important resources that may provide financial support, housing, or practical help, such as assistance with transportation or companions in some communities. Funeral homes may offer special programs for low-income individuals including sliding-scale plans for burials or transferring the decedent back to their home country.

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 immigrants. Additionally, it can be time intensive to arrange for adequate caregiving in the United States 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 United States, 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 the ability to tolerate travel (e.g. 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 careful planning and exploring resources available based on the patient’s goals, wishes and needs. Contacting the consulate of the patient’s home country may be of great value as many are able to help with the provision of identification documents and financial assistance needed for travel (see Fast Fact #338).