14 Key Takeaways on the Health Care Experience of People with Serious Illnesses

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People, including Latinos, who are living with a serious illness face significant challenges in their health care experience, according to a research review from the Center to Advance Palliative Care (CAPC), part of the nonprofit Icahn School of Medicine at Mount Sinai.

The research review analyzed over 200 peer-reviewed journal articles to understand the health care experience of Latino patients with serious illnesses, and their families and unpaid caregivers.

This is important for all people because Latinos represent 19.5% of the US population and their experience is reflective of the healthcare experience of the entire US.

Let’s take a closer look into 14 key findings and their impact on patients.

1. Evidence is inconclusive as to whether certain patients face issues in access to, and use of, palliative care services.

Palliative care is specialized medical care for people living with a serious illness.

“This type of care is focused on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the patient and the family,” according to Get Palliative Care.

The CAPC review showed that, while several studies found that Latino patients were less likely to receive palliative care in both inpatient and outpatient settings, other studies found Latino patients were just as likely or more likely as others to use palliative care, the research review states.

2. Latino patients with serious illness receive low-quality pain treatment.

One study found that Latino 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.

Similarly, studies also reported that Latino patients are less likely to be prescribed or use pain medications, both opioids and other analgesics.

“Another study found that Hispanic patients continued to experience pain even while receiving hospice care,” the research review states.

3. Latino patients often experience poor non-pain symptom management.

“Several studies found that Hispanic patients with serious illness experience more non-pain symptoms, such as dyspnea and cachexia,” according to the research review.

The review also highlighted that studies also found that Latino patients are prescribed fewer symptom management medications, including benzodiazepines, antipsychotics, and antidepressants.

Similarly, another study of patients with breast cancer found that Latino patients born outside of the US were less likely to receive supportive medications than those born within the US.

4. In addition to issues in pain and symptom management, Latino patients often receive sub-optimal care when facing serious illness.

The review states that various studies found Latino patients and their caregivers report receiving low-quality care.

Additionally, a study using national data reported that Latino patients tended to receive care from poorer-quality hospices.

Latino patients were often likely to experience different treatment due to their background, according to another study on the care experiences of patients who were living with serious illness, according to the research review.

5. The costs of care for Latino patients with serious illness are often higher.

“One study found that after controlling for potential confounders, Hispanic patients incurred approximately $6,800 more in health care costs … at the end of life,” according to the research review.

Results also showed that in studies conducted using patients with various serious illness diagnoses, Latino patients were found to have incurred higher hospital charges and Medicare expenditures.

Another study found that Latino patients had higher re-hospitalization costs post-discharge.

6. Latinos experience issues in relation to preferences for, and utilization of, life-prolonging treatments and high-acuity care.

Latino 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, according to several different studies.

Additional studies found that studies found that Latino patients have higher rates of hospital admission, ED visits, ICU stays, and readmissions.

Not only did Latino patients have higher rates of hospital admission, ED visits, ICU stays, and readmissions, but Latino adult patients with cancer were reportedly more likely to report a preference for future mechanical ventilation at the end of life.

In both adult and pediatric populations, Latino patients have had longer lengths-of-stay in the hospital and a higher proportion of deaths in the hospital setting.

“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,” according to the research review.

7. Background and religion play important roles in how Latino people with serious illness, and their families, perceive and address their care needs.

Background and religion are an important consideration, along with the concept of “family,” which impacts how decisions are made and care is received during serious illness.

“An examination of Hispanic cancer patients found that many hold optimistic religious beliefs, such as belief in miracles,” according to the review. “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.

8. The caregivers of Latino patients play a dynamic role in the care of those with serious illness.

Caregivers are a lifeline for people living with cancer, dementia, and other diseases.

Almost half (47%) of Latino 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, according to the research review.

In another study of children living with cancer, a higher proportion of Latino parents reported parent-led decision-making (compared to shared parent-physician decision-making or physician-led decision-making).

“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,” according to the review.

Contrarily, a study found that Latino caregivers were less likely to report difficulty in managing the patient’s symptoms at the end of life.

Additionally, another 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.

9. Clear communication between patients, caregivers, and providers is an important element of health care, but is sometimes a barrier to quality care for patients with serious illness.

Communication is crucial when it comes to health.

“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,” according to the research review.

Physicians reported that a lower proportion of Latino parents had a good understanding of medical information.

Another qualitative study that included clinicians from 6 health systems found that they expressed more difficulty discussing advance care planning with Latinos.

10. For some Latino patients, language impacts experiences with serious illness.

Language issues can affect health.

For instance, 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.

Similarly, 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.

“Additionally, a study found that cancer centers infrequently provided information on visitor policies translated into Spanish, even in geographic areas with sizeable Hispanic populations,” according to the research review.

11. Issues have been identified in psychosocial aspects of care for Latino patients.

Psychosocial care can include the psychological, emotional, and spiritual aspects.

A 2023 study of veterans found that there was a correlation between Latino background and post-traumatic stress disorder at the end of life.

“Both Hispanic patients and caregivers experience psychosocial distress related to the patient’s illness and report low levels of emotional support,” according to the review.

12. The financial situation of Latino patients impacts care experiences.

According to the research review, not only were Latino patients with lower income levels less likely to receive a palliative care referral, but communities with lower quality (determined by factors such as unemployment rate and median household income) were associated with a greater likelihood of re-hospitalization.

A cancer survivor study found that Latino patients were less likely to have health insurance available.

Similarly, household material hardships were more prevalent among Latino parents in a study of children with cancer.

13. There are mixed findings on whether there are issues in access to, and use of, hospice services for Latino patients.

While some studies found that that Latino patients were less likely to be referred to hospice or utilize hospice, additional studies show no difference between sub-populations or even higher discharges to hospice, according to the research review.

One study found that Latino participants were less familiar with hospice and less likely to share hospice information with loved ones.

An additional study on family caregivers in California found that Spanish-speaking caregivers were less likely to consider hospice care.

14. Advance care planning is often a complex issue for Latino patients.

Latino patients are less likely to participate in advance care planning, including completion of advance directives, several studies show.

However, other studies found that during a terminal hospitalization, Latino patients were more likely to have a DNR.

“Qualitative research efforts have identified various [challenges] 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,” according to the research review.

Knowing the Health of Your Community

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