The Health Care Experience of Hispanic Patients with Serious Illness: A Literature Review

Please note: studies included in this section used various methodologies to determine the use of palliative care. For example, some used the International Classification of Diseases (ICD) code for a “palliative care encounter” to mean utilization of palliative care services, which is not always valid and is applied inconsistently. The mixed findings reported here could be due to methodological differences in determining interactions with palliative care teams.

• Several studies found that Hispanic patients were less likely to receive palliative care in both inpatient and outpatient settings.^{[1] [2] [3] [4] [5]}

• However, there were also studies that found Hispanic patients were just as likely as other racial/ethnic groups, or even more likely, to use palliative care.

• In a study on the timing of palliative care consults, Hispanic patients were more likely to receive palliative care late (0-14 days before death) than White patients.

• Several studies reported that Hispanic patients are less likely to be prescribed or use pain medications, both opioids and other analgesics.^{[6] [7] [8]}

• One study found that Hispanic patients had lower odds of filling an opioid prescription at the end of life than White patients. When the prescriptions were filled, they were prescribed for lower dosages.^[9]

• Another study found that Hispanic patients continued to experience pain even while receiving hospice care.^[10]

• Several studies found that Hispanic patients with serious illness experience more non-pain symptoms, such as dyspnea and cachexia.^{[11] [12] [13]}

• Studies also found that Hispanic patients are prescribed fewer symptom management medications, including benzodiazepines, antipsychotics, and antidepressants.^{[8] [14]}

• One study of patients with breast cancer found that Hispanic patients born outside of the United States were less likely to receive supportive medications than Hispanic patients born within the United States.^[15]

• Various studies found that Hispanic patients and their caregivers report receiving lower quality care than White patients.^{[16] [17] [18] [19]}

• One study using national data reported that Hispanic patients tended to receive care from poorer-quality hospices.^[20]

• A study on the care experiences of patients who were living with serious illness and identified as LGBTQ+ found that Hispanic patients were more likely than White patients to experience discrimination.^[21]

• In studies conducted using patients with various serious illness diagnoses, Hispanic patients were found to have incurred higher hospital charges and Medicare expenditures.^{[22] [23] [24] [25]}

• One study found that after controlling for potential confounders, Hispanic patients incurred approximately $6,800 more in health care costs than White patients at the end of life.

• Another study found that Hispanic patients had higher re-hospitalization costs post-discharge than White patients.

• Several studies found that Hispanic patients are more likely to elect high-intensity treatment, such as CPR, mechanical ventilation, artificial nutrition, and radiation therapy (near the end of life), and less likely to withdraw life-sustaining treatment.^{[26] [27] [28] [29] [30]} Similar findings apply for Hispanic children living with serious illness and the choices made for their care.

• One study also found that Hispanic adult patients with cancer were more likely to report a preference for future mechanical ventilation at the end of life.

• Various studies found that Hispanic patients have higher rates of hospital admission, ED visits, ICU stays, and readmissions.

• Additional studies, in both adult and pediatric populations, found that Hispanic patients have had longer lengths-of-stay in the hospital than White patients.

• Compared to White patients, Hispanic patients have a higher proportion of deaths in the hospital setting.

• The concept of “family” is very important within Hispanic cultures and impacts how decisions are made and care is received.^{[31] [32]}

• Studies indicated that the cultural implications of religion were an important consideration during serious illness.^{[33] [34] [35]}

• An examination of Hispanic cancer patients found that many hold optimistic religious beliefs, such as belief in miracles.^[36]

• Additionally, caregivers of Hispanic hospice patients were more likely to deem emotional and spiritual forms of support to be insufficient, suggesting greater demand for support than was supplied.^[37]

• In one study, almost half (47%) of Hispanic patients with dementia reported that they lived with their adult children (compared to 25% of White patients), and more than one in four reported receiving financial help from them.^[38]

• Depending on the aspect of care being considered, caregivers of Hispanic patients reported more or less difficulties than caregivers of White patients. For example, a study found that Hispanic caregivers were less likely to report difficulty in managing the patient’s symptoms at the end of life.^[39] Similarly, a study of patients with a history of stroke, and their caregivers, found that the surrogates for Mexican American patients reported better communication quality and shared decision-making.^[40]

• Conversely, studies showed that caregivers of Hispanic patients are more likely to report challenges related to their involvement in treatment decisions and lower levels of knowledge related to support services.^{[41] [42]}

• In one study of children living with cancer, a higher proportion of Hispanic parents than White parents reported parent-led decision-making (compared to shared parent-physician decision-making or physician-led decision-making).^[43]

• Qualitative studies have identified that Hispanic patients respect advice provided by clinicians, but also that a lack of good patient-clinician communication can be a barrier to accessing end-of-life care.^{[36] [44] [45]}

• In a study of the relationships between physicians and the parents of children with cancer, physicians reported that a lower proportion of Hispanic parents had a good understanding of medical information compared to White parents. Participating physicians also perceived Hispanic parents to have a lower interest in prognosis details than White parents.^[46]

• Additionally, a qualitative study including clinicians from six health systems found that they expressed more difficulty discussing advance care planning with Hispanic and other minority populations.^[47]

• Several qualitative studies identified language (and language barriers) as integral to the views of some Hispanic patients regarding overall health care at the end of life.^{[48] [49] [50]} In a focus group of dementia patients and their caregivers, Spanish-speaking participants identified a need to improve community education on the illness and its management.^[51]

• In one study concerning ICU patients during the COVID-19 pandemic, Spanish as a primary language was associated with higher odds of a unilateral do-not-resuscitate (DNR) order, which does not need patient or surrogate approval.^[52]

• Additionally, a study found that cancer centers infrequently provided information on visitor policies translated into Spanish, even in geographic areas with sizeable Hispanic populations.^[53]

• Both Hispanic patients and caregivers experience psychosocial distress related to the patient’s illness and report low levels of emotional support.^{[54] [55] [56] [57] [58]}

• A 2023 study of veterans found that there was a correlation between Hispanic ethnicity and post-traumatic stress disorder at the end of life.^[59]

• One study found that Hispanic patients with lower income levels were less likely to receive a palliative care referral.^[60]

• Another study found that lower community quality (determined by factors such as unemployment rate and median household income) was associated with a greater likelihood of re-hospitalization for Hispanic patients.^[61]

• In a study of cancer survivors, Hispanic patients were less likely to have health insurance available.^[11]

• Socioeconomic status has an impact for pediatric patients as well. In a study of children with cancer, household material hardships were more prevalent among Hispanic parents.^[62]

• Various studies across different diagnosis categories found that Hispanic patients were less likely to be referred to hospice or utilize hospice.^{[27] [63] [64] [65]}

• There are additional studies, however, that show no difference between sub-populations or even higher discharges to hospice for Hispanic patients.^{[66] [67] [68]}

• In one urban study, Hispanic participants were less familiar with hospice and less likely to share hospice information with loved ones than Asian participants.^[69]

• In a study of family caregivers in California, Spanish-speaking caregivers were less likely to consider hospice care.^[70]

• Some studies found that when compared to their White counterparts, Hispanic patients are less likely to participate in advance care planning, including completion of advance directives.^{[71] [72] [73]}

• One study, however, found that during a terminal hospitalization, Hispanic patients were more likely to have a DNR.^[74]

• Qualitative research efforts have identified various barriers to advance care planning for this population, including the role of religion and faith, communication between the patient and their clinicians, taboo discussion topics, and family dynamics.^{[35] [36] [70] [75] [76]}