Family Members Make End-of-Life Decisions for the Patient
Family plays an important role in the end-of-life decision-making process in both Latino and Asian cultures. Personal autonomy is not highly valued among Chinese or Latinos—this runs counter to the individual-based paradigm prevalent in American mainstream culture. Among Latino families, a male member, usually the oldest son or uncle, is responsible for making decisions on behalf of the dying family member. The expectation is that if the elected caregiver respects and loves the dying patient, they will insist the hospital “do everything” to keep the patient alive—this can mean another round of chemotherapy or multiple emergency room visits. The children of a Chinese parent will often advocate for aggressive, life-prolonging treatment out of a sense of filial duty. Asian and Latino family members will often not reveal a poor prognosis to the dying relative. In Latin America, physicians often do not disclose bad news or a poor prognosis with their patients and are expected to keep up the patients’ hope. “Family may want to shield their loved one—‘Don’t tell mother that she has cancer. It’s gonna make her depressed, she can’t handle it psychologically,’ ” said Dr. Smith, who has done extensive research on racial and ethnic disparities in end-of-life care.
Failure to Discuss End-of-Life Preferences
Can Lead to Poor Outcomes
“In our own family, we don’t talk about death definitively,” said Julie Thai about her family in Vietnam, “We don’t talk about it at all because we just love our family members so much that we talk about them as if they’re still alive.” Julie Thai’s parents emigrated to the United States after the Vietnam war, but they kept in close contact with the rest of the family that remained in Vietnam. Thai and her mother were close to Thai’s 85-year-old grandfather, who told them he wanted a natural death and did not want to be resuscitated. But his family in Vietnam did not have any conversations with him as he was nearing death. Thai’s aunt and her cousin took charge of making decisions on his behalf. “I think everybody assumed they would be in charge of his care, that they would do what they felt was right for him,” said Thai, “It was never talked about and that’s why his needs were not met at the end of life.”
When Thai’s grandfather was taken to the hospital for the last time, her aunt asked the hospital to do everything to keep him alive. Hospital staff kept feeding him beef broth, even though he was a vegan. “He was very upset, he was crying, he was pulling the IVs out, he was spitting up the food,” said Thai, “He just didn’t want anything they were giving him.” Despite the attempts to save his life, her grandfather went into cardiac arrest and he died twenty-four hours later. “He was caused more pain by them imposing these heroic measures on him, as opposed to just letting him go, which is what he would have wanted,” said Thai.
Overcoming Cultural Barriers and Taboos
Trained medical professionals and social workers can make a critical difference in reaching out to ethnic patients and their families and helping them prepare for the end of life. Professional translators are essential to assist medical staff and families and help them overcome language barriers and facilitate conversations with patients. “You should always have a professional interpreter for any serious conversation,” said Dr. Alexander Smith, “You may think your Spanish is pretty good because you took it in college, but that does not rise to the level of professional translation.” All too often, says Smith, so-called “ad-hoc interpreters” are used in place of professionals and this may lead to inaccurate translations. “For example, a family member may have their own agenda, trying to protect their loved one from a serious diagnosis, and they may not translate everything completely,” said Smith, “Nurses, though they may speak the language, may not know how to translate the medical terminology into the other language.”
Educational outreach and good communication also require special training in cultural humility—an awareness of the patient’s values, beliefs, and traditions and a willingness to listen closely to the patient. Cultural humility can also mean becoming a student of the patient, forgoing the role of expert, and allowing him to become a full partner in his care. “You have to let the family lead,” said hospice social worker Karen McCabe, “Instead of us taking the lead, ‘oh, well we know all about this, we’ll be right over, we’ll tell you what to do.’ ”
McCabe works at Hospice of Santa Cruz County, which provides home hospice services to patients nearing the end of their lives. Santa Cruz County has a large number of farmworkers and one-third of the population is Latino. Twenty years ago, Latinos made up only three percent of all hospice patients in Santa Cruz. Today, the number of Latinos in hospice has increased to eight percent, thanks to community outreach efforts by the Hospice of Santa Cruz. McCabe says working with the family and overcoming their fear of hospice is key to providing the patient with good end-of-life care. For example when explaining hospice, McCabe says she avoids confusing terminology like “hospicio” and instead tells families that hospice means getting all the care they want at home. “I explain that we’re going to be bringing nurses into your home and we’re going to be sending the medicines into your house and we need somebody in your family to be in charge of care and we’re going to teach them what to do,” said McCabe.