In age. Other major differences are seen in the

In the
United States the elderly, people aged 65 and over, make up 15% of the total
population and this statistic is projected to rise up to 20% by 2050. The elderly
are not only living longer, but are also becoming more diverse. This means that
there is a growing percentage of elderly who will need palliative care. Currently,
the percentages of minority groups in the United States are: 17.8% Hispanic
American, 13.3% African American, and 5.7% Asian American. The U.S. Census
Bureau reported that ethnic minorities experienced a population increase between
2015 and 2016, but the non-Hispanic White group experienced a decrease. However,
when it comes to how ethnic groups are choosing to spend their final years, differences
begin to emerge. It is important to understand the determinants of ethnic
disparities in palliative care, in order to better meet the needs of the aging
population.

One
reason is the difference in cultural orientations, in particular societal
expectations. In Western culture, there is an emphasis on the individual rather
a collective focus present in many minority groups. In 1991, the United States
passed the Patient Self-Determination Act, which “ensures that a patient’s right
to self-determination in health care decision be clearly communicated and
protected (Kelley, 1995).” This federal law also applies to pediatric patients
as long as they are old enough to understand. This is in contrast to many
nonwestern cultures where families
prefer to receive all the information and filter what is given to the patient,
regardless of age. Other major differences are seen in the number of caregivers
and in decisions to take part in hospice care. For example, Asian Americans are
almost twice as likely to care for elders than the general population of the
same age. Caregivers between the ages of 45 and 55 make up 22% of the adult
population: 19% of whites, 28% of African Americans, 34% of Hispanics, and 42%
of Asian Americans (Caregiving Among Asian Americans and Pacific Islanders Age
50+, 2014). Despite mortality death rates
from cancer and presentation at later stages of disease, minority groups
significantly underutilize palliative and hospice services.

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Hispanics make up the largest minority
group in the United States. The percentage is expected to increase to 30% by
2060. However, only 10% of elderly people use hospice care (NHPCO Facts and
Figures: Hospice Care in America, 2016). Two
of the major reasons for this are a lack of understanding of what palliative
care entails and a language barrier. Many think that signing off on hospice
care means that the doctors can no longer help the patient. The word “hospicio”
means orphanage or asylum in Spanish. Hispanics prefer the words compassionate
care as opposed to hospice (Fernandez, 2016).
Spanish is the second most spoken language in the US with the highest
concentrations in large cities such as New York and Miami. While many hospitals
offer translators, there is a need for more Hispanic doctors and health care
workers because people often feel more comfortable being treated by someone who
understands their views and reasons. Also, physicians, nurses, and other health care workers must be
sensitive to language barriers and make sure that what they are saying is what
the patient clearly hears. This is not only a problem in situations with a
language barrier. Sometimes people cannot easily accept or comprehend news if
it does not meet their expectations. For example, many terminally ill patients
may be able to initially accept that going into hospice care is a better choice
than continuing a potentially harmful treatment. When these two problems are
put together, it becomes even more challenging for the physician and the patient
to communicate appropriately.  

African Americans make up the second
largest minority group in the United States. While many of the same reasons are
shared with other minority groups, racial discrimination is of particular
importance in examining their end of life care choices. The National Mortality Feedback Survey reported
that, “hospice use was negatively associated with African-American
race/ethnicity independent of income and access to healthcare (Greiner, 2003).” Nearly half
of White Medicare beneficiaries enrolled in hospice before death, compared to
only a third of black patients. This could also be partly due to the evidence
that African Americans will choose more aggressive treatments compared to
Caucasians (Noah, 2012). Researchers found that the number of CPR requests
increased near death and the number of DNR requests decreased. Racial
discrimination remains one of the largest barriers to the use of palliative and
hospice care. The Tuskegee Syphilis Study is one of the most documented and
cruel experiments that left many African-Americans to distrust the majority White
health care institution. Everyday situations of racial discrimination such as
the many events of police brutality towards African Americans lead to exclusion
and feelings that these African American people are not equal. This leads to
fewer conversations with one’s physicians and a lack of trust when making decisions
and therefore choices to use formal care even when it is available and
affordable. Unfortunately, African Americans have the highest rates of death
from illnesses than any other ethnic group. Acknowledging why and how
end-of-life choices are being made is an important step for communicating and delivering
quality care to African-American patients.

Asian Americans have the longest life
expectancy of all ethnic groups. Cultural values and norms are some of the main
reasons behind the underutilization of formal care institutions compared to any
other ethnic group. Chinese
Americans are the largest subgroup and are more likely to be immigrants than
other Asian subgroups. In Chinese culture there is a life-long reciprocal obligation to take
care of the family. This is the reason why Asian Americans are the most likely
to live in multigenerational families. Since there is a filial duty to take
care of elders, caregiving is not usually seen as a “burden” as many might
believe or notice in other cultures. This may be used as a coping strategy and
explain why there are low rates of caregiving stress in Asian American
communities. A nationwide study showed that 73% of Asian Americans believe
caring for their parents are expected, in comparison to 49% of the total
population (Caregiving Among Asian Americans and Pacific Islanders Age 50+,
2014). Furthermore, immigrants will
often have a lower socioeconomic status than US-born citizens and therefore not
have the monetary or social resources to use hospice care. To be eligible for
the Medicare Hospice Benefit, patients must provide informed consent. Many Asian
American families will make decisions for the benefit of the entire family. To
use the Medicare Hospice resources in the United States, the patient would have
to know every detail of his or her prognosis, but in Japan, patients can be
enrolled in hospice without signing informed consent (Suzuki, 1993). Asian
American families may want to protect the patient from any indication of a
terminal diagnosis to keep the patient in good spirits. These situations seem
to also apply other Asian subgroups except for Filipino Americans. A study
conducted by Quyen et al. found that Filipino Americans were more likely to
enroll earlier and have longer hospice stays than Whites (Quyen et al., 2007).
They could not fully conclude why this was the case, but reported that it is
most likely because many Filipino Americans are more westernized than other
Asian subgroups due to their Spanish colonial influences. This could eliminate
or at least lower the language and cultural barrier when to comes to seeking
formal care. Another possible reason is that they are predominately Roman
Catholic, and belief that life’s goal is to live in Heaven. Decisions for end
of life care of Asian Americans are made in a cultural context. These cultural
considerations may conflict with American values and result in less use of
formal care institutions.

Another major reason why minorities often
choose informal care over formal end of life care is due to economics. In
general, minorities have lower socioeconomic status and utilize formal care
significantly less than White-Americans, and instead receive more informal
support from family. Medicare requires a life-expectancy prognosis of 6 months
or less to receive hospice services and does not cover care that combines both
hospice and curative services such as chemotherapy. The average cost of a
hospice patient is $11,510.00. In 2015, the majority of Medicare hospice
patients were Caucasian. Of all patients who used hospice care, 86.8% were
Caucasian, 8.2% African American, 2.0% Hispanic, and 1.2% were Asian American (NHPCO Facts and
Figures: Hospice Care in America, 2016).

We are obligated to understand the needs
of the medically underserved minority groups and recognize how cumulative
disadvantage make matters worse. Hispanic Americans, African Americans and
Asian Americans are only some of the ethnic minority groups, but make up a
large percentage of people who are vulnerable in the White majority health care
system. Efforts from physicians, insurance companies, and patients can help
eliminate the information gaps and other barriers to end of life care by
recognizing challenges both general and specific to ethnic minority groups. This
way society can better address and appropriately consider the needs of the aging
population as it is only going to grow as immigration rates increase,
technology advances, and health care improves.

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