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Staff must be willing to set aside their own beliefs and learn others
As a four-month-old Pakistani girl lay dying in her crib at home, her young father slipped out of the house and left his wife to keep watch alone. The baby girl, born with a number of birth defects, would on this night succumb to her congenital diseases without her father by her side, her mother left alone to be consoled only by her own tears.
Most would find the father’s absence at such a time to be highly inappropriate. How could a father not be with his child at the moment of death? How could he not be there to offer support to his wife and share his grief with her?
It would be easy to condemn the actions of the young father — if we critique his actions from a western perspective, that is. But if we examine his actions from another cultural perspective, his Muslim beliefs and his Pakistani heritage, we can develop a better understanding of his motives.
What hospice workers already knew was that this father did not leave the side of his dying baby for selfish reasons. Knowing the child was hours away from death, his responsibility as the spiritual leader of his Muslim family was not to be at the side of his child but to be in his masjid, praying for his child and acknowledging God’s will during a confusing and difficult situation.
"It was a very difficult case because it involved a small child," says Denise Greenberger, LSW, manager of psychosocial and spiritual support for Hospice Atlanta (GA). "But they shared with me their spiritual beliefs and we talked about the Koran."
For Greenberger, a social worker, it would have been easy to assume the Pakistani family shared her own concepts about spirituality and the dying process. Such an assumption could have led to tragic circumstances. Rather than helping the family provide a peaceful death for the child, Greenberger’s actions might have served as an obstacle to healing for them.
Cultural diversity in hospice care is an implied mission. Hospices strive to relate to patients as they really are. The challenge is moving cultural diversity beyond its golden-idol appeal and implementing policies and practices that transform hospice into providing the individualized care that is one of the hallmarks of the industry’s philosophy.
Still treat patient as an individual
While it seems a departure from recognizing the uniqueness of each culture, the starting point on the road to achieving diversity in hospice care is to recognize the uniqueness of individuals, says Connie Borden, RN, MSN, ANP, executive director of Hospice By The Bay in San Francisco.
"Regardless of race, we need to find out who the patient is as an individual," Borden says. "We need to ask about their beliefs, what they believe about the illness and where they are spiritually."
And just as every hospice worker needs to be aware of an individual’s unique makeup, each worker also must be aware of his or her own inexperience in dealing with different cultures and realize how each worker’s own culture and upbringing can affect patient care. Hospice workers still can unknowingly impose their own beliefs on their patients. For instance, inexperience with a specific culture can cause a hospice worker to allow culturally significant matters to go unrecognized because a nurse’s own background may not prompt him or her to ask the right questions. To assist someone from another culture, hospice workers need to learn how to set aside their own beliefs and seek to understand the needs of their patients, says Jane Bergquist, RN, BSN, hospice program manager for Presbyterian Hospice and Palliative Care in Albuquerque, NM.
Presbyterian Hospice is like a lot of hospices around the country. As communities become more ethnically and culturally diverse, hospice workers are forced to learn how each group perceives the dying process. Once a predominantly Hispanic and white community, Albuquerque is home to a significant population of Native Americans from the Navajo and Pueblo Indian tribes, as well as Vietnamese people, Laotians, and African-Americans.
"We have never offered orientations about these cultures," Bergquist says. "Instead, we share what we learn in team meetings."
According to experts, hospices should take the following steps to ensure cultural diversity in their care:
• Use local religious and cultural resources and contacts to help educate staff and to serve as resources when needed.
• Recruit paid staff and volunteers from a variety of cultural backgrounds, especially from among cultures a hospice serves.
• Provide inservice training for staff regarding these cultures. The speakers need to cover the concepts this culture has about disease, pain management, dying, burial, and the grief process. (For example, hospice staff learned that for an East Indian, suffering is "God’s will," so there is a more stoic attitude toward pain.)
• Be sure translation services are available. Rely on family as the last resort, because they may have trouble saying things about death and you may not be aware of how they are passing on your information. (For example, if you want a son to translate to his mother about her breast cancer, it may be totally inappropriate for him to do that in their culture.)
In many cultures, communication begins with the family, and hospice workers need to be aware of the family dynamics at work. In some cultures, for example, it is more appropriate to communicate through a family leader than directly with the patient.
"You have to be very sensitive to include the family in the discussion," says Bergquist. "In some cultures, it is not appropriate to talk about death."
A family meeting with hospice representatives is good way to learn how to approach patients and families from various cultures. It is important to remember that the key decision-maker may not be the same person as the primary caregiver.
Also be aware of language differences. A language barrier may be present because of a family’s limited English. Realize that while people with a moderate comprehension of English may appear to understand discussions, family meetings may require an interpreter to communicate complex medical information. Also be aware of taboo words. For example, in some cultures the word "death" should not be used.
The only way to achieve this level of understanding is to ask questions, says Greenberger. Do not hesitate to ask about relevant cultural aspects. It is respectful to show an interest in other cultures.
"We learned that in the traditional Chinese culture, one does not tell the person they may die or discuss a poor prognosis," Bergquist says. "The family will decide what to tell their elder. If the person is an American-born Chinese, this could be different, so again the family can help with the decision about what is said."
A hospice worker should start by admitting to the patient and family that he or she has little understanding of their culture. "Normally a family will appreciate your openness and see your questions as their opportunity to educate you," Greenberger adds. "It’s one thing they can do that can help direct the care the patient will receive."
While families play a role in educating hospice workers, hospices have a responsibility to educate their own workers. A formal training program should be established based on the various ethnic, religious, and other cultural groups a hospice serves.
The interdisciplinary team meeting provides a perfect venue for cultural diversity training. Use the meeting, experts say, to tap into the experience and background of team members. For example, Greenberger, who is Jewish, often shares her faith with others to help team members determine how to approach patients and their families.
And just as spiritual matters are an important topic during team meetings, so should cultural matters be. Use team meetings to share experiences from the field with other team members, to discuss cases made difficult by cultural matters, and to bring in outside help to enlighten the entire team on a specific culture.
Hospice Atlanta regularly invites speakers to educate their staff. Among the speakers are rabbis, ministers, and staff members themselves.
"I always find it fascinating to learn and share with staff," Greenberger says.