Immigrants Facing Death Without Home Hospice Support

Photo: Alice Bian in her funeral supply store

Photo: Alice Bian in her funeral supply store. (Alhambra Source/Daniela Gerson)

LOS ANGELES–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.

Hospice Deaths Graph

“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.

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About Daniela Gerson

Daniela Gerson, Editor, Alhambra Source, a community news website serving a primarily Asian and Latino community, and director of USC Annenberg's Civic Engagement and Journalism Initiative. She has reported on immigration issues for the Financial Times, New York Sun, Weekend America, Der Spiegel, and WNYC: New York Public Radio, among other outlets. Daniela also directs Reporter Corps, a program that trains young adults to report on their own communities.

  • Charlie Antoni

    Thank you for this article its arrival in my mail box was timely. A week ago I was having dinner with a longtime hospice colleague. We were discussing the future of hospice as we know it and wondering with all the regualatory constraints, late referrals, and falling revenues where will hospice go from here. When I read the article the arose in my mind question is hospice the only acceptable option worth pursuing? I am not going to answer my own question instead hope that the question will cause others to pause and ponder. Knowing what we have learned over the past 3 or 4 decades since Dame Cecily Saunders helped lauch hospice in the US is our mission to bring hospice care to all dying persons? Or will those persons be better served by adopting the underlying philosophy of hospice care …comfort care (Palliative Care) to the care of all those facing advanced illness with a life limiting trajectory. And support the Medical/Techno expertise requried for apporpriate pain and symptom management with other forms of support from family, friends, community, and fellowships. Is the delivery of care more important than the philosophy …meaning we can only count ourselves successful when we have enrolled the majority of dying individuals in a hospice delivery program Vs. when we have all those that are facing life limiting illness comfortable (well managed pain/symptoms) and suported by the care system of their choosing?

    • Sandra Escalante

      Thanks for your comment Charlie. I was thinking the same thing. I think there are two very important things: The first is to inform the terminally ill all types of care that is best for him. The second is to respect the decision taken by the patient and his family according to their culture and their desire for care in the last days of his life. The choice they make will surely be the best for them and their families: Being in a hospice, or at home enjoying family affection until the last days of his life.