Although there are few studies on the impact of culture on bereaved families, we know the bond between parent and child grows within a specific social and cultural context. When a child dies, the expression of grief, as well as the value and meaning of bereavement varies widely across cultures, and also among individuals within a similar culture. It is a mistake to assume that a belief from one’s own culture applies to other cultures. As healthcare providers, we must be adept at learning, respecting and honoring death and loss from the family’s perspective rather than our own.
Every effort should therefore be made to honor a family’s cultural choices and behaviors. The values, beliefs and practices of western medicine may contradict those of the family. For example, the western practice of emotional restraint around the time of death is not consistent with the majority of other world cultures, which tend to be more emotionally expressive. In some cultures, a male figure or an older female relative may be in charge of decision-making and should be included in all conversations. Involving a representative from the family’s cultural community may ease communication and coordination of care. Although stereotyping should be avoided, it may be helpful to understand possible differences in belief systems. In general, many cultures express discomfort with death. Some examples of cultural differences follow.
For some families, eye contact and touch may be expected; for others it may not be appropriate. When a Central American, Puerto Rican or Chinese American infant is born with malformations, the mother may be blamed by other family members, and education of the family may be necessary. Specific practices may also be performed by family members in this circumstance. Other cultures believe that illnesses and genetic defects are the result of sin or karma, including Korean and Cambodian Theravada Buddhists or Christians, Haitians, Hindus, Muslims, Sikhs, and Japanese Americans.
The discussion of the end of life is not appropriate in some cultures, and may be more difficult for those of Cuban, Mexican, Middle Eastern and Chinese descent. Gypsy grandparents and orthodox Jews may also avoid the baby and decline photographs.
Some parents may wish to not be present for the death, nor hold their dying or dead infant. However, some families are simply frightened of the body, and modeling holding the dead infant may be helpful. Some cultures and religions forbid autopsy. Chinese Americans may decline autopsy believing the body to be the soul’s place to live during future visits to earth. Hmong people may also decline postmortem examination as they believe that people go to the next world with the same appearance as they leave this one.
Preparing the body for burial is a sensitive and culturally defined practice. For example, the precise time of death may be important for those of Jewish and Islamic backgrounds, as they usually bury their dead within 24 hours. Arab-Americans additionally prefer the arms and legs to be straightened at the time of death for shrouding. American Indians may require the placenta for burial with the infant. Amish and Muslims prefer the body to be intact and organs returned after autopsy. Gypsy families may request the body to be embalmed immediately after death.
Language barriers are sometimes present. A hospital-employed certified medical interpreter should always be used for conversations regarding end-of-life care, and more time may be needed for these discussions when a language or culture differs from that of the healthcare team. Involving the same interpreter/s throughout the process, and using simple words and short sentences for ease of translation will be helpful.
Some people have a basic fear or distrust of authority figures, such as doctors and healthcare personnel. People of lower socioeconomic status may view the cessation of intervention as a cost-cutting measure aimed at them. The literature supports explaining to parents that heroic care is not desired by those who can afford it (ie: neonatal practitioners or physicians). Telling parents that many caretakers might prefer palliative care for their own infants in the same situation may allow parents to see that their infant is not a subject of discrimination[15, 256].
The Culture Vision website at www.crculturevision.com provides additional information regarding specific cultural beliefs and practices at the time of a child’s death.