When dealing with serious illness and death, patients who are immigrants to the U.S. may face cultural and logistical challenges involving language differences, health literacy deficiencies, variations in family decision-making and role responsibilities, insurance barriers, and lack of financial or social resources.
For some immigrants, acculturation may decrease variations in ritual and practice preferences. For many nearing the end of life, their ethnic, cultural, and spiritual selves may still align more closely with their place of origin rather than the country they reside in, even if they have lived in that country for a longer time period.
Unauthorized immigrants face an additional set of challenges and usually do not receive quality health care. They are not eligible for insurance coverage under the Affordable Care Act, Medicare, or Medicaid services. Because they usually have no health care coverage, they typically come to the local emergency room with the most advanced or terminal stage of their illness and receive emergency medical treatment through the Emergency Medical Treatment and Labor Act (EMTALA) and safety net clinics.
Research has shown that these patients tend to suffer from high symptom burden, receive aggressive end-of-life care, including prolonged hospitalizations and intensive-care unit admissions, and are likely to have hospital deaths, regardless of their preferences for care. It is not unusual for unauthorized immigrants to have limited or no social or financial support, a mistrust of the U.S. health care system, and fear of deportation.
Yearning for Family and Home
When unauthorized immigrants are nearing the end of life, they often request to return to their country of origin or desire to see their family one last time. Many of these patients are too ill to travel far and do not have the financial resources to return home. The situation can be complicated when their family members are also unauthorized immigrants who may be hesitant to come forward for fear of deportation.
It is not unusual for patients who are unauthorized immigrants to die in the hospital, alone, and without family or friends. If next of kin is unknown, the local coroner’s office is notified, and the patient’s physical remains would likely be cremated and may be sent to an undisclosed location. This undignified death and burial is often in direct conflict with culturally appropriate death rituals and patient wishes.
How can we as professionals, working within complex healthcare systems, provide culturally appropriate care to authorized and unauthorized immigrants facing serious illness and at end of life?
Culturally Appropriate Care
Like all person-centered care, culturally appropriate care involves paying attention to the individual’s needs and preferences.
In order to provide quality care for authorized and unauthorized immigrants, the health care team should use a cultural assessment instrument to identify cultural values, practices, and important rituals when the person enters the health care system. This may require the use of a professional medical language interpreter.
Keep in mind there may be very little time to put the appropriate interventions in place, so seeking the assistance of a palliative care team or accessing team members such as a social worker and a chaplain are essential at the time of diagnosis. Every effort should be made to identify and honor the patient’s preferences for care throughout the illness trajectory, during the dying process, and at the time of death.
Strategies to Bring Comfort
Whenever possible, it is critical to honor the patient’s cultural values regarding treatment options and end-of-life care. If the ill person wishes to return to the country of origin and that is impossible, consider some interventions that may bring comfort to the immigrant and the family. For example, you might:
- Identify others in the community from the immigrant’s country of origin who are familiar with cultural traditions and practices at end of life and can bring the essential rituals to the dying individual.
- Create a sacred space in the patient’s acute care or skilled nursing facility room to honor the immigrant’s memories of the country of origin.
- Work with the immigrant and the family to make arrangements for the immigrant’s body or ashes to be returned to the country of origin for burial.
When culturally sensitive palliative care is provided, it not only relieves symptoms, pain, and stress to improve the patient experience, it also brings another level of comfort and quality of care to patients and their families.