'Five wishes' and other end-of-life options

Ethnic seniors do want some control over the way they die. Some reluctantly choose hospice care in America; others opt to return to their homeland.

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Ethnic seniors do want some control over the way they die. Some reluctantly choose hospice care in America; others opt to return to their homeland.

Part 2 of 2

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 if, for instance, 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 package. This state law, passed by voters in 2008, is only the second in the country allowing patients with less than six months to live to end their lives sooner with the assistance of a physician.

Short of that controversial option, though, there are alternatives that give people some control over 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.

"Five Wishes" in 26 Languages

Tam Hue, 73, part of the Vietnamese Senior Association's lunch program, said even though she is healthy she started thinking about her end-of-life care in 2007, when she heard a “Five Wishes” presentation by staff from Seattle’s Harborview Medical Center.

Widely used nationwide, the "Five Wishes" program was created by Aging With Dignity, a national non-profit group based in Florida. The program 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.

Seniors in Seattle's Vietnamese, Latino and Somali communities are keenly interested in knowing their options at life’s end, but many also are reluctant to explore the issue. Death is never an easy topic, but cultural and language barriers add to the difficulty ethnic elders have in understanding their choices.

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

Somalis are a more recent immigrant or refugee group, having come to Seattle in waves 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. "Our children like to talk about it, but older people don't want to. They want to put it off.... They say tomorrow, or the next day."

In the Latino community, Cirilo Hernandez, 62, who immigrated 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."

Carmen Cunningham of the Seattle Cancer Care Alliance stressed the diversity of viewpoints among Hispanics. "Hispanics come from 22 different countries," she said, "and there are many socioeconomic differences, religious beliefs, education. 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, Cunningham 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."

Yen, who serves many Asian elders, said the person who presents end-of-life options to a patient can make a difference in the person's final decision. She noted that many older Vietnamese have limited knowledge about pain management and said 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," Yen said. "I go in and talk about the options, and I relate my own experience with my family in hospice care."

Talking about End of Life

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," Yen said. "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 your family member will die, that there is no hope. You're labeled then; there's a stigma attached to it."

Khanh Cong Nguyen, 74, has talked about preparing for the end of his life with his wife, "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," Nguyen said.

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

For immigrants, one alternative to hospice care is to spend their last days in their home country.

Most of the Vietnamese seniors interviewed for this article 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 has 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.


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About the Authors & Contributors

Julie Pham

Julie Pham

Julie Pham is the vice president of community engagement and marketing at Washington Technology Industry Association.