The Challenges and Cultural Barriers Faced by Asians and Latinos at the End of Life
The end of life is not easy for most Americans nearing death. The good news is that up to ninety percent of pain and suffering can be controlled. But the bad news is that over half of all dying Americans experience unwanted pain and suffering during their final days. And the numbers are even greater for people of color. African Americans, Asians, and Latinos have less access to the pain medication and comfort care that hospice can provide at the end of life compared to whites.
Asians, Latinos, and other ethnic minorities whose second language is English face additional challenges. Language barriers and cultural traditions can inhibit awareness of and discussions about end-of-life options, and are often compounded by poverty and lack of education.
The Cultural Taboo Against Openly Discussing Death
In many traditional Latino and Asian cultures, speaking openly about death is taboo, especially when a loved one is seriously ill. Among the Chinese, talking about death, especially with elders is considered disrespectful.
At a recent gathering, grief counselor Terri Daniel spoke with Chinese seniors residing at Mercy Housing, a low-income assisted-living community in San Francisco. The elders told Daniel they have spent a lot of time and thought setting up altars in honor of deceased ancestors and paying regular visits to the cemetery—but have not spent time making plans for their own deaths. Daniel asked how many of them have had end-of-life conversations with their children. Only six out of twenty-five seniors raised their hands. Fang Huang, resident services coordinator, said she and others at Mercy Housing have tried to encourage the elder residents to talk with their families and complete advance directives. Huang told Daniel, “We have tried everything. Nothing is produced. Do you have any ideas?” When asked why they hadn’t spoken with their families, one woman said they didn’t want to discuss death with their children because they were afraid it would upset them. Another woman said, “My children are actually even more fearful than us.”
Failure to Plan for the End of Life
Only one-third of Americans have completed an advance directive, a legal document that specifies a person’s preferences for medical treatment in the event of a serious or terminal illness. Whites are more likely to have an advance directive than other racial and ethnic groups. Latinos and Asians are less likely than whites to discuss their end-of-life preferences or engage in advance care planning. Less than ten percent of Latinos have announced or written down their preferences about the kind of care they would want at the end of their lives.
These inequities have serious ramifications. Patients who engage in advance care planning (end-of-life conversations with family or health providers) are less likely to die in the hospital or to receive futile intensive care. Family members have fewer concerns and experience less emotional trauma if they have the opportunity to talk about their loved one’s wishes.
“Making sure that we talk to people and prepare people in advance for these serious illnesses—that’s what we’re trying to promote nation-wide,” said Dr. Alexander Smith, one of the many concerned palliative care specialists in the Bay Area seeking to improve care at the end of life, “More importantly is understanding what their goals and values are. What type of life is worth living? What kind of trade-offs are they willing to make in order to have that type of life? These are the kinds of conversations that are very important and help family members prepare.”