Hospice/Palliative Care: Concepts of Disease and Dying
10.1 Culture and Ethnicities: End-of-Life (EOL) Care Disparity Among Diverse Populations
10.1.2 Background of Ethnicities in the US
The World Health Organization (WHO) states that healthcare professionals need to be more aware of cultural diversity and the wide range of differences between vari- ous cultures especially in the areas of autonomy, rituals, and the way death is viewed [ 10 ]. Cultural views shape how individuals view EOL care and determine prefer- ences for disclosure of a terminal illness, advanced directives, life support and life- sustaining treatments, pain and symptom management, and decisions on whether EOL care is best in the home or hospital. Healthcare in Western cultures is domi- nated by autonomy, individual decision-making, quality of life, and science.
However, other cultures may place greater value on interdependence and harmony, focusing more on family decision-making and respect for authority. It is important to recognize these differences and the way they affect access and utilization of hos- pice and palliative care [ 9 ].
The American Geriatric Society ( AGS ) [ 4 ] and Stanford University Geriatric Education Center (SGEC) [ 11 ] are pioneers in gathering data about ethnic older adults to help clinicians care effectively for these patients. Table 10.1 summarizes their work related to EOL care and disease concept.
Literature about ethnic older adults is limited because it is based on qualitative or observational research of low quality and on data extrapolated from younger gen- eration. Moreover, each ethnic group is heterogeneous in itself. This recognized diversity in the lived experience of ethnic older adults requires that the patient be individually assessed for their health beliefs and knowledge during clinical inter- view. An important caveat to assessing elder patients about cultural perspective is to avoid ‘stereotyping or grouping’ the patient because this may diminish the person’s individuality establishing a less than ideal patient–physician relationship.
Similarly, individuals who have lived away from their native countries for extended period of time may be more acculturated to an American way of life and may have adopted many beliefs associated with Western culture (assimilated acculturation). By contrast, those who have immigrated more recently are more likely to hold onto cul- tural traditions, language, and belief systems ( traditional acculturation ) or to hold onto traditions in a reminiscent way with adaption of some Western values ( bicultural acculturation ). Based on a Scottish qualitative study among South Asia Sikh and
Table 10.1 Older ethnicities’ values, concepts, and EOL decision- making Older ethnicity
Values pertinent to elderly, provider,
and disease concept EOL care decisions and death 1.
African- Americans
The belief in three different types of illness: natural, occult, and spiritual (punishment) and this infl uences the presumed causes of illness. Despite the religious belief that the death is a transition from earth to heaven, death is seen as a struggle to be overcome and aggressive therapy usually preferred due to fear of giving up too soon
Reluctance to EOL planning and hospice use due to mistrust in the system, given history of segregation, and discrimination. Important to give time to these discussions to build trust.
Family-based oral communication (vs.
written) is important as well as community/church support
2.
Alaska Natives
The Elder is respected but the provider is seen as a healer therefore the patient will not look directly at the provider out of respect.
Traditional healing is incorporated with tribal doctor’s practice.
Decision-making is made with a family member
Reference to death as “loss of breath”
and it is seen as natural part of the cycle of life rather than an ending.
Passing their knowledge/skill to the young is part of their preparation for death. Do not believe in cremation or organ donation. Potlatches are ceremonies 1 year after death to honor loved one
3.
American Indians
Calm listening is valued over talking and touching of the body by strangers in some Indian cultures is inappropriate. Often advice from healer takes precedence over physician’s recommendation
No Advanced directives (AD) due to misuse of signed documents, distrust in system, and belief that family will take care of them. Many have specifi c rituals depending on the tribe to care for body after death in order for the spirit to cross over safely to the other side
4.
Asian Indian Americans
The older adult is respected and considered a fi gure of wisdom. Filial piety is expected from children.
There is belief in karma,
reincarnation, and illness is seen as payment for past sins
Low utilization of advanced directives due to belief that discussion may hasten death. Death is seen as transition to another life. Family (extended) decision-making and death at home is preferred
5.
Chinese Americans
Elders and physicians are respected.
Disease is caused by yin/yang (mind and body united) imbalance and mental illness is caused by emotional imbalance or spirits
Older males should be the main decision maker. There is poor knowledge of advance directives and high caregiver burden risk among daughters due to fi lial piety. Speaking about death is considered bad luck and that is why oral “Do-not-resuscitate”
(DNR) orders are preferred over written consent
6.
Filipino Americans
Elder respect is strong as well as fi lial piety and fatalismo. Logic of illness prevention is to avoid bad behavior; and of curing is to restore balance ( timbang ). Important to inquire about traditional medicine
Preference for family decision-making and secrecy because awareness of prognosis thought detrimental. There is low use of hospice and advance directive completion
(continued)
Table 10.1 (continued) Older ethnicity
Values pertinent to elderly, provider,
and disease concept EOL care decisions and death 7.
Hispanic Americans
Preference to speak Spanish and establish trusting relationship with their providers (personalismo).
Important to inquire about over-the-counter medications or home remedies as well as immigration history. Some believe spirits (good and evil) infl uence health
Preference for family decision-making with consideration of religion and prayer. Low use of hospice as well as advance directives but palliation acceptable. Aggressive treatment usually favored and there is fear of losing all care with DNR orders
8.
Japanese Americans
Confucianism is a code of ethics placing importance on family values, including fi lial piety.
Concept of yin/yang, fl ow of energy, herbal remedies, acupuncture, massage, and moxibustion (mugwort burning) used
There is established family hierarchy for decision-making (oldest male), and preference for consensus over autonomy and secrecy over disclosure due to the fear of losing hope. Organ donation avoided
9.
Korean Americans
Confucianism supports respect for authority (bowing to elder) and fi lial piety. Illness is caused by failures in fulfi lling spiritual obligations, ancestral anger, or spirits. “Han bang” resembles yin-yang balance beliefs. Acupuncture, moxibustion, and cupping used
Family unit takes precedence over patient autonomy and eldest son makes care and EOL decisions. Belief that discussing death or illness with patient hastens it. Less aggressive therapy usually sought but written directives use is rare
10.
Pakistani Americans
Older adult is respected as well as women privacy. The doctor is the authority. Disease is a punishment from god for sins committed.
Tradition to rub body of the sick with holy water or oil. Ramadan is 1 month fasting during daylight and it may be bypassed in frail elderly.
Mental illness is a taboo
Death at home and family decision- making are preferred; and elders often defer to decisions of children. Death rituals (washing and positioning) are customary; and ‘do not touch the body of the dead because it belongs to Allah.’ Low use of AD completion.
Withholding food is forbidden in Islam
11.
Vietnamese Americans
Combine Western and traditional approaches. Diseases have religious, spiritual causes therefore balance sought (yin/yang, hot/cold).
Cupping and coining are traditional.
Wife or unmarried daughter is caregiver. Family or elder patient may make decisions
Preference for home death because soul wonders if dies out of home and fear of harmful spirits in the hospital.
EOL support or discussion may be considered contributing to death.
Death is part of life, therefore, wills and funeral often planned ahead Adapted from : https://geriatrics.stanford.edu/ethnomed.html [ 11 ]; and American Geriatric Society. Ethnogeriatrics Committee. Doorway Thoughts: Cross-Cultural Health Care for Older Adults , Volume 3. Jones & Bartlett Learning, Sudbury, MA, 2008. Available at: www.geriatrics- careonline.org [ 4 ]
Muslim patients, the most vulnerable patients include recent immigrants who have poor English language skills, with no family advocate, who are dying of nonmalig- nant diseases, and are at particularly high risk of inadequate EOL care [ 12 ]. Using common sense and appropriate communication skills with each individual will help in assessing their values, beliefs, spirituality, and life story, for better EOL care.