By Dr. Julie Pham
New America Media/Northwest Vietnamese News
When nearly six in 10 voters in Washington state approved Initiative 1000, the 2008 Death with Dignity Act, Seattle resident Tam Hue (last name not given), 73, was one of the few Vietnamese elders who was not only aware of the ballot measure but also voted for the controversial law.
In 1998, Oregon was the first state to legalize physician-assisted suicide.
What Washington’s law says
Washington voters approved Initiative 1000 by a 58 percent majority and became a law on March 5, 2009.
The law states, “This measure would permit terminally ill, competent, adult Washington residents medically predicted to die within six months to request and self-administer lethal medication prescribed by a physician. The measure requires two oral and one written request, two physicians to diagnose the patient and determine the patient is competent, a waiting period, and physician verification of an informed patient decision. Physicians, patients, and others acting in good faith compliance would have criminal and civil immunity.”
Advocates for such laws admit that enacting them is slow going. No states have propositions similar to I-1000 on this November’s ballots. But Melissa Barber, of the Death with Dignity National Center, said the group is “laying the groundwork” in New England states to try adopting a similar law.
However, Barber says, almost no ethnic elders have used these laws so far. “Even in Oregon, you’ll find 97.5 percent of the people using the law over the last 12 years identify as white,” she said.
Interviews show that ethnic elders in the Seattle area are keenly interested in learning more about their health care options at the end of their lives, often to avoid having their lives artificially prolonged or become a burden to their families. However, most are wary of even discussing, much less voting on it.
Little knowledge, mixed views
Unlike most people at the Vietnamese Senior Association (VSA), Tam recalled learning about I-1000 after she attended a hospital seminar about end-of-life decision making. “I read about it in the voters’ pamphlet in the general election in 2008. I found out that they had it in Oregon, and I thought, I want to have this right here,” she said.
However, Tam is rare among Vietnamese voters.
Thi Nguyen, 82, said, “I only vote for senators and presidents. People don’t have the level of understanding to vote for those other items. How am I supposed to understand that voter packet?”
In Seattle’s Latino community, few agreed to openly talk about assisted suicide. Those who did reflected divided viewpoints.
Cirilo Hernandez, 62, who immigrated to the United States from Mexico 40 years ago and is Roman Catholic, does not think his community should know about I-1000 because “people should not have that right to choose when they die.”
But, Elizabeth, 56, a naturalized citizen from Chile, who asked that her surname not be used, said, “It’s an alternative. Now that it’s legal, people don’t have to go to jail when they take that alternative. It’s better for people to have a choice.” She said she has no formal religious affiliation.
At the Somali Community Center of Seattle, 20 male elders gathered to talk before they went to pray. The center’s leader, Sahra Farah, said women she spoke with did not wish to discuss end-of-life issues, but she arranged and translated the interviews with the men.
Most in the Somali group did not know about the law. But the interview questions prompted a lively debate.
One 80-year-old man who immigrated to the United States in 2004 said, “My religion doesn’t allow us to persecute a life and to remove a person. We all have a natural time limit.”
Only two men in the room said they had voted on I-1000. One voted against the measure in 2008 but said, “If I could do it again, I would vote yes, to support a choice.”
As with the Vietnamese and Latinos interviewed, a desire to “not waste money” influenced some of the men’s end-of-life planning. “I don’t want to live on life support,” said a 70-year-old Somali man who immigrated in 1996. “It’s expensive. Why continue to live? Why bother?”
Ethnic support for initiatives negligible
According to CNN exit polls, whites made up 83 percent of Washington state residents who voted in the 2008 election. Four percent of voters were Black, 7 percent Latino, and 3 percent Asian. But the level of ethnic support for the law was negligible.
Robb Miller, director of Compassion and Choices, said that when the group started to campaign for passage of I-1000 in 2007, “we did not concentrate on the ethnic minorities.” Instead, the group focused its limited resources on “moving the moveable middle,” he said.
His organization’s pre-election survey showed, “it wasn’t going to be worthwhile trying to move people with strong religious affiliations.”
Eileen Geller, director of True Compassions, which opposed I-1000, said that although her organization “connected to get the ethnic and minority votes,” the measure’s proponents had five times as much funding as the coalition against physician-assisted suicide.
Although many faith-based organizations volunteered to translate materials into Spanish, Vietnamese, and Tagalog, Washington state’s ethnic turnout was light, stated Geller.
Since the Death With Dignity Act went into effect, of the 47 people who ended their lives during the law’s first year, 98 percent were non-Hispanic whites.
In Oregon, the percentages have been similar, according to George Eighmey, former director of Compassion and Choices in Oregon. From 1998 through 2009, the organization facilitated access to the law for 1,517 Oregonians.
Most ended up not choosing suicide. Experts say that most people who apply for the option want to have it available if, for instance, pain becomes unbearable, but few end up taking that action.
However, 375 people did choose to end their lives with a doctor’s help in using designated medications. Of those people, only 13 were Asian American, eight Latino, seven Black, seven biracial, and six American Indian.
Religion may not determine vote
Faith is not always a predictor of one’s voting patterns. The CNN exit poll showed that 47 percent of Catholics and 49 percent of Protestants in the state voted yes on I-1000.
Phi Khanh Nguyen, a medical interpreter in Olympia, said, “As a Catholic, I should be against this law. But I think people should have a choice.”
Thai Quang Pham, 68, who opposed I-1000 and is active in the Catholic community, remembers that before the election, the Vietnamese Catholic Church of Washington made a proclamation to reject the Death With Dignity Act.
Thien Chan Quan, the directing monk at Nam Quang Temple in Portland, Ore., noted, “Buddhism allows for a choice, unlike the Catholic Church.”
“I believe people should have the choice to opt for this,” he continued. “However, I also believe that unless someone is in incredible pain, it would be better to stay alive for those six months because it would give them the opportunity to prepare and change their attitude for the next life.”
At the VSA in Seattle, Marie Thu Le, 75, confessed, “When my time comes, I don’t want to be dependent on machines. I don’t want to be in a nursing home.” She is a devout Catholic.
“Five Wishes” in 26 Languages
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.
There 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.
According to the 2008 American Community Survey, more than 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.
Tam 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 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 Farah.
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, Hernandez 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 Seattle Cancer Care Alliance, stressed the diversity
among Latinos. “Hispanics come from 22 different countries,” she said. “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
“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 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. However, 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 [that] 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
“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 with his wife about preparing for the end of his life, he added, “I haven’t talked to my children about it. It’s not the right time.”
However, Marie Thu Le 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
Most of the Vietnamese seniors interviewed felt that 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 story 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. She is the managing editor of Nguoi Viet Tay Bac/Northwest Vietnamese News.