Ethnic Seniors Avoid End-of-Life Talk, but Want More Options

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New America Media/Northwest Vietnamese News, News Feature, Julie Pham,
Part 2 of 2. Read part 1 here.

At the Vietnamese Senior Association (VSA) in Seattle, Marie Thu Le, 75, confessed that “When my time comes, I don’t want to be dependent on machines. I don’t want to be in a nursing home.” Her candor was surprising given that she’s a devout Catholic.

Seniors come here to eat a traditional Vietnamese lunch, ballroom dance, play chess or ping-pong and meet with friends. Sometimes, doctors come by from a local hospital to talk about the “Five Wishes,” which involve things people can consider to prepare them for the end of life.

The longevity revolution has extended average life expectancy by 30 years since 1900. But in the process medical science has been able to prolong life, sometimes beyond a person’s ability to make medical decisions. That means it is increasingly important for people to let others know how they wish to be treated and who should speak for them, for instance, if they become comatose.

Many health experts nationally are watching how terminally-ill patients in Washington state take advantage of the Death with Dignity Act, discussed in the first article in this series. This law, passed by voters in 2008, is only the country’s second measure that allows patients with less than six months to live to end their lives sooner with the assistance of a physician.

Far short of that controversial possibility, though, are options to help people write down the kind of treatment they would like in case they become mentally incapacitated. They can state their wishes in an advance directive, such as the Five Wishes document, or designate a friend or family member as their medical decision-maker through a durable power of attorney.

Besides Vietnamese elders, seniors interviewed in Seattle’s Latino and Somali communities were also keenly interested in knowing their options at life’s end, but many were also reluctant to explore the issue. One’s death will never be an easy topic, but cultural and language barriers add to the difficulty ethnic elders have in understanding their choices.

According to the 2008 American Community Survey, over 50 percent of Vietnamese in Washington report they speak English “less than very well.” Of the 72,000 Vietnamese living in Washington, 12 percent are 65 years old or older.

“Five Wishes” in 26 Languages

Tam Hue, 73, another senior who participates in VSA’s lunch program, said even though she is healthy she started thinking about her end-of-life care when she participated in a 2007 presentation of the “Five Wishes” with staff from Seattle’s Harborview Hospital.

Widely used nationwide, the “Five Wishes” program was created by Aging With Dignity in Florida. It provides people a five-point form—now available in 26 languages—on which they can state their preferences if they become unable to speak for themselves.

Of the three ethnic groups interviewed, Somalis are the most recent immigrant or refugee group. They came in waves to Seattle in the 1990s and 2000s. According to the 2006-2008 American Community Survey, approximately 8,690 Somalis live in Washington.

Many Somali elders gathered at the Somali Community Center of Seattle said they did not like to talk about end-of-life issues.

“Somalis depend on our children to care of us,” said Sahra Farah, leader of the center.

Farah added, “Our children like to talk about it, but older people don’t want to. They want to put it off. They don’t want to talk about it. They say tomorrow, or the next day.”

In the Latino community, Cirilo Hernandez, 62, who emigrated from Mexico 40 years ago, said he never talks about end-of-life issues with his family, though he would “if you twist my arm.”

“I think about the end of my life daily though,” Hernandez said. “It’s a reality.”

But Carmen Cunningham, a clinical patient navigator at the Seattle Cancer Care Alliance, stressed the diversity among Hispanics. “Hispanics come from 22 different countries,” she said, “and there are many socioeconomic differences, religious beliefs, education.”

Cunningham continued, “In general, Hispanics do not talk about end-of-life issues unless they are faced with terminal illness and they have to talk about it.”

But, she said, “Many of the Hispanic elders here are of Mexican background and used to be farmers and have low medical literacy. It may skew data, because those who have more education and wealth may be more open about discussing their health concerns with family and friends.”

Fear of Pain and Being a Burden

Most of the Vietnamese interviewed said they feared “being put on a machine,” “being a burden to my family,” and “wasting government money.”

“When I’m near death, I would just like to be dead already,” said Tam. “I don’t want to burden the living.”

Many Vietnamese, though, see state-sponsored hospice care as a drain on government resources. Lisa Butler, public policy and outreach director at the Washington State Hospice and Palliative Care Organization, noted that Medicare reimburses hospice providers for the care they provide terminally-ill people.

Hospice care, Butler said, actually saves the state money. Medicare’s flat daily fee for hospice care replaced more expensive fee-for-service payments for traditional medical care patients would otherwise receive.

Although hospice may be less expensive than hospitalization, some Vietnamese are concerned about the costs of providing any kind of life support at all. All of the Vietnamese interviewed for this article mentioned — often before being asked — the expense of hospice care.

The response to hospice is different, though. Increasingly, Vietnamese are becoming used to the idea of hospice care.

Yen, a nurse, who often consults with Vietnamese seniors about palliative care (she asked not to be fully identified), said that in her 14 years of nursing, she has seen a growing number of Vietnamese turn to hospice care because “they are beginning to understand what it is.”

At her organization, Yen serves many Asian elders. The person who presents end-of-life options to a patient makes a difference in the person’s final decision making. She noted that many older Vietnamese have limited knowledge about pain management and said that they might choose an early death because they are unaware of the options.

“I see if a white person brings up hospice care with an Asian elder, the Asian will refuse the care,” said Yen.

“I go in and talk about the options and I relate my own experience with my family in hospice care,” Yen said.

Talking about End of Life

Although many of those interviewed are comfortable with discussing end-of-life issues, others are not. The Vietnamese have a saying, “If there’s water, then there’s a waterfall,” which means if there is a bit of life left, then there is life.

“There is a tension in the Vietnamese community in talking about [the] end of life,” said Yen. “Some people are very open about it, and they put a lot of planning into their funerals. Others — if you talk about hospice care, you’re basically accepting that you will die or you family member will die, that there is no hope. You’re labeled then, there’s a stigma attached to it.”

Although Khanh Cong Nguyen, 74, has talked about preparing for his end of life with his wife, he added, “But I haven’t talked to my children about it. It’s not the right time.”

It is easier for families if the elder can issue an advance directive because no one wants to make those decisions. “Children are afraid they will be stigmatized in the community, for not having filial piety,” said Khanh Cong Nguyen.

Marie Thu Le, though, did talk to her children about her advance directive. She wants to stop living if only machines are supporting her. She recalled, “My children all said, ‘Mom, you do what you think is best. This is probably for the best’.”

Last Days in Vietnam

One alternative to hospice care is to spend one’s last days in one’s home country.

Most of the Vietnamese seniors interviewed felt Vietnamese have the option of returning home, especially if they do not have strong family connections in the United States.

“Many people are afraid of being alone, afraid of going to nursing homes where they will be alone. They’d rather go home to Vietnam, where they will be surrounded by loved ones or at least be able to communicate easily,” said My Dung Tran.

Since this interview, she returned to Vietnam to care for her elderly mother, who wants to die in Vietnam.

But that option is not for everyone. Khanh Cong Nguyen said, “Anyone who has family here, who has been here for a long time, they would not be able to return. They are too used to the life here.”

Julie Pham, Ph.D., wrote this series as part of a New America Media Fellowship sponsored by the Atlantic Philanthropies. She researched the article with assistance from Seattle’s 1680 AM Radio Luz, 1360 AM El Rey and the El Mundo newspaper.

New America Media is an Atlantic grantee.

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