Photo: Hospice Deaths
Alice Bian’s business is death. She boasts that her Valley Boulevard funeral supply store in Alhambra, Calif., carries the United States’ most extensive collection of Chinese afterlife-ritual items and clothes for the deceased: silk capes and pants with drawstrings that make it easy to slide over a body in rigor mortis, high-heel shoes without padding since they will never touch the ground, red blankets to frighten away evil spirits on the journey to heaven.
If anyone should know about the end of life, it’s Bian. Before the Chinese immigrant focused on the dead, she cared for the dying as a nurse’s assistant at a local convalescent home.
Yet, when it came to her own husband’s last days, Bian, who speaks only limited English, fears she failed him. He wanted to stay at home, but as his lung cancer spread to his brain, she said she felt she had no choice but to turn him over to long-term hospital care.
Home Coverage Available But Little Used
Bian did not know that through her Medicare benefits, her husband’s wish to die at home could likely have been fulfilled.
Most Americans — regardless of ethnicity — say they want to die at home. Hospice is a service that enables many to do so, and also provides social and psychological support to family members.
Although roughly half of Americans die under its auspices, there is a lack of information and are widespread misconceptions about hospice in ethnic communities.
The result is that even though Medicare guarantees coverage of hospice to most Americans, 85 percent of deaths under hospice in California in 2010 were among whites, according to a California Health Care Foundation (CHCF) study.
And while Asians and Latinos accounted for about a quarter of total deaths, they made up only 8 percent of deaths served by hospice.
“The primary barrier is knowledge, just knowing that hospice exists,” said Susan Enguidanos, PhD, a professor of gerontology at the University of Southern California. “The second is misconceptions.”
Some of the challenges are shared across ethnic groups. Most immigrants come from countries where hospice services do not exist. They do not have family members who have died under hospice care, and for doctors it is often more complicated to explain the service to them because of language and ethnic barriers.
Minorities Distrust U.S. Health System
Not only immigrants, but also ethnic minorities already in the United States are under-represented among users of hospice. Minorities, Enguidanos said, often assume that doctors do not have their best interests in mind. “With African Americans it would be that the health care system is giving up on them,” she said. “There is a lot of distrust for the health care system.”
This is also a barrier that Silvia Austerlic, an outreach and cultural liaison at Hospice of Santa Cruz County, says she experiences with Latino farm workers.
Another key obstacle that is particularly prevalent for Latinos, Austerlic notes, is a distrust of talking about death. The CHCF study showed that Latinos are the most likely of any ethnicity to want to extend life for as long as possible, and the least likely to have wishes put in writing.
“Death is a very frightening topic,” Austerlic said. “You have people who have never had an end-of-life conversation.”
Asians are more likely to have put end-of-life wishes in writing and favor not prolonging life artificially, according to CHCF. But Enguidanos found other barriers to hospice use among them when she held focus groups with Chinese Americans in conjunction with the Chinatown Service Center. Some expressed fear that their house would be worth less if someone died in it, worry about being burdensome to family or the government, or concern that hospice was a “mercy killing” or euthanasia.
“When we gave the definition of hospice, they said, ‘Oh, you were talking about mercy killing. Oh, these people come in your house and help kill you. You die faster,” Enguidanos said.
Many Live Longer
Joan Teno, MD, associate director of the Center for Gerontology and Health Care Research at Brown University, argues that in her experience the opposite may be true. Some studies have shown that people in hospice and palliative care actually live a few months longer on average because they reduce stress on both the patient and caregiver.
“The biggest misconception I see,” said Teno, “is that hospice care is only for people actively dying,” she said. “Hospice allows you to make a decision to not go back and forth between the acute care hospital and home, acute care hospital and the nursing home, but to really focus on comfort.”
This is exactly what Alice Bian wishes she could have provided to her husband for his last days. But her knowledge of hospice care came too late to help her husband.
At Bian’s shop — where some days she arrives at 4:30 a.m. to prepare flowers for funerals and then waits for the next recently bereaved client to arrive — she said that if her customers knew there was a way to keep their loved ones at home in their final days, “of course” they would seize the opportunity.
Daniela Gerson, editor of the Alhambra Source, wrote this article with support from a California Healthcare Foundation Journalism Fellowship, a project of New America Media in collaboration with the Stanford In-reach for Successful Aging through Education Program.