At one of the luncheons held twice a week for the Vietnamese Senior Association in Seattle, 75-year-old Marie Thu Le came up to me and said, “I heard you’re writing about end of life. I want to share my opinion on that. When my time comes, I don’t want to be dependent on machines. I don’t want to be in a nursing home.”
I was surprised by her candor, especially when I found out she considers herself a devout Catholic.
Like many Vietnamese seniors I have discussed end of life issues with, Marie Thu Le has thought carefully about end-of-life issues.
This conversation took place at the largest Vietnamese Senior Association meeting in Seattle, with regular lunchtime gatherings on Tuesdays and Fridays. The seniors come to eat a traditional Vietnamese lunch, ballroom dance, play chess and ping pong, and meet up with friends.
Sometimes there are doctors from a local hospital who come by to talk about the ‘Five Wishes’ so that they can begin preparing for end of life issues.
Phuong Mai Vo, 60 years old, has volunteered at the senior center for three years.
“They talk about death often here. They talk about preparing for it,” Phuong Mai Vo said.
What the seniors don’t talk about is Washington’s new Death with Dignity Act.
The Death with Dignity Act was passed in the fall of 2008, when 58% of Washingtonians voted for it and it became law on March 5, 2009. At the time, Washington was the second state to have passed that law, Oregon being the first. Since then, Montana has also passed a Death with Dignity Act.
The Washington 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.
These Vietnamese are not talking about it because most of them have never heard of it.
When I asked Marie Thu Le of her opinion on the new law, she said, “I’ve never heard of it. It wasn’t until you just told me that I am now aware of it.”
“Many of us don’t know about this law,” said My Dung Tran. “I think people should know about it now.”
This was a common answer in response to questioning on the new Death with Dignity Act.
Limited knowledge
There are large linguistically isolated, ethnic communities such as the Vietnamese, Latinos, and Somalis who are in danger for not knowing their legal options. For immigrant elders in the United States, they face the greatest linguistic isolation because they come at a much later age in life, making learning English particularly challenging.
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.
These Vietnamese turn to their local in-language press, to religious institutions, and to their social networks to be informed on local issues. But the local Vietnamese press did not address the initiative in the fall 2008.
Although Vietnamese are familiar with the concept of advance directives and durable power of attorney, many do not know about the passage of the Death with Dignity Act. Vietnamese generally refer to it as the right to “choose to die early.”
When I began to discuss Death with Dignity with the seniors at the Vietnamese Senior Association, most of them were open about their feelings, like Marie Thu Le.
Those Vietnamese in the health profession I interviewed said they almost never openly talk about the Death with Dignity Act.
Phi Khanh Nguyen, a medical interpreter who serves the Vietnamese in the Olympia area, said that he himself doesn’t know much about the law and “most Vietnamese do not know about it either.”
“Loan”, a cultural liaison with Harborview Medical Center in Seattle, said she has never discussed the law with an elderly person nor has she ever “heard a doctor bring this up.”
“I’ve only ever spoken about this issue with colleagues and with younger people,” said one Vietnamese nurse “Yen” who often consults with Vietnamese seniors about palliative care. “If I brought this up, I would be the subject of ridicule. It’s fun to debate this issue with my colleagues, but not within the Vietnamese community.”
Only a very few Vietnamese have heard of this law before I interviewed them.
Khanh Nguyen, 74 years old, said he had heard about the Death with Dignity Act in Oregon in mainstream news when it passed in 1998. Washington’s law mirrors that of Oregon.
“Even before it passed in Washington, I had talked about this with my wife,” said Khanh Nguyen. ‘If when my time comes and they don’t have that law in Washington, I want to go to Oregon.”
Khanh Nguyen said he knows of some Vietnamese who are aware of the law, but they never openly discuss it.
“Someone might make a reference to it, but people don’t discuss it,” said Khanh Nguyen. “People don’t give out a reaction one way or another.”
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 Hue, a 73 year old in Seattle. “I don’t want to burden the living.”
Many Vietnamese see state-sponsored hospice care as a drain on government resources.
According to Lisa Butler, Director of Public Policy/Outreach at the Washington State Hospice and Palliative Care Organization, Medicare Hospice does “fully reimburse hospice providers for the care that they receive in a flat daily reimbursement (per diem) that covers all expenses “related to the terminal illness.”
“[Hospice care] actually saves the State costs that they would normally incur through a “fee for service” arrangement for the patient’s medical care and expenses, especially since it is a flat daily rate for all of the patient’s costs “related to the terminal illness,” wrote Butler in an email.
Although hospice care may be less expensive than hospitalization, some Vietnamese are concerned about the costs of providing any kind of life support at all.
“Vietnamese are naturally thrifty,” said Phi Khanh Nguyen. “They don’t want to see resources go to waste.”
All of the Vietnamese interviewed mentioned, often before being asked, the expense of hospice care.
Thi Nguyen is an 83-year-old who strongly objects to the Death with Dignity because of her Catholicism.
“The priests say that even though it costs the state a lot of money to keep us alive, by God’s law, we do not have the right to choose to die earlier,” said Thi Nguyen. “God tells us we can’t take away our own lives, not even if we know we’ll die the next year.”
More and more Vietnamese are becoming more used to the idea of hospice care.
Yen said that in her 14 years of experience, she has seen the number of Vietnamese turning to hospice care increase, because “they are beginning to understand what it is.”
At her organization, Yen serves many Asian elders. She thinks who presents these end-of-life options makes a difference in the person’s final decision making. She pointed out 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,” Yen said. “I go in and talk about the options and I relate my own experience with my family in hospice care.”
An alternative to hospice care for Vietnamese not available too much of the general population is to spend one’s last days in Vietnam. Although exact statistics are unavailable, most of those interviewed talked about the general desire for Vietnamese elders to return to Vietnam, especially if they do not have strong family connections in the United States.
“Many people are afraid of being along, afraid of going to nursing homes where they will be alone. They 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, My Dung Tran has returned to Vietnam to take care of her elderly mother, who wants to die in Vietnam.
“I have seen elders return to Vietnam at all costs,” said Loan. “Many Vietnamese want to be buried in their homeland.”
“I want to return home when I’m closer to the end,” said Fung Xan (check notes for spelling). “I’ve been back several times since then.”
“It depends,” said Khan Cong Nguyen. “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.”
A Voting issue
Tam Hue said that she had participated in Harborview Hospital’s presentation of the Five Wishes in 2007. Although she is healthy, she started to think about her end of life.
“I started thinking about it, after the workshop,” said Tam Hue. “Then I read about it in the voters’ pamphlet in the General Election in 2008. I found out they had it in Oregon and I thought, I want to have this right here.”
Tam Hue is rare among Vietnamese voters, who typically vote for the candidates only and overlook the voting literature. Vietnamese have one of the highest voter turnouts among Asian groups.
According to the National Asian American Survey taken before the 2008 Election, 74% of Vietnamese foreign born and likely voters would use in-language election materials. The average answer to that question among the five major Asian groups was 34%. Eighty percent of naturalized Vietnamese citizens were likely to vote in the 2008 election.
“I voted in that Election, and I don’t remember seeing it,” said Marie Thu Le.
“I vote every year, but I usually just vote for the candidates,” said Hay Nguyen. “This is the first time I’ve heard about this law.”
“I only vote for senators and presidents,” said Thi Nguyen, 82 years old. “People don’t have the level of understanding to vote for those other items. How am I supposed to understand that voter packet?”’
According to the CNN exit polls, 83 percent of those who voted in the 2008 election were white, 4% were African American, 7 percent Latino, and 3 percent were Asian. But in the final tally, the statistics for those minorities who voted on initiative 1000 were negligible and only the white vote was counted 57% for and 43% against.
Since the law has gone into effect in Washington, of the 47 people who have ended their lives as of March 2010, 98% percent were non-Hispanic whites.
The statistics in Oregon show that minorities have historically underutilized this option.
According to George Eighmey, the director of the Compassion & Choices in Oregon, from 1998 through 2009 there have been 460 Oregonians who died using a lethal dose of medication prescribed under Oregon’s aid-in-dying law. Of those 460, 7 were Asian-American, 2 Hispanic, 1 Native-American, 1 African-American, and the remainder Caucasian. These figures come from the Oregon Department of Human Services records.
From 1998 through today, Compassion & Choices have facilitated access to the law for 1517 Oregonians who died. Of that number 375 died taking the medication. Of the 1517, 13 were Asian-American, 8 Hispanic, 7 African-American, 7 Bi-Racial, 6 Native-American and the remainder Caucasian.
Aside from linguistically isolated immigrants, these numbers do not reflect the sizeable populations of second, third, and fourth generations of Asians, Hispanics, and Africans living in the US.
Even the number of minorities volunteering to support either sides of the Death with Dignity is few.
Of the three staff members and 33 volunteers at Compassion & Choices, Eighemy said there are two Hispanics, one Asian, and one African American. Eighemy said they would most likely decline to speak with the press because ‘there are still people out there’, referring to the possibility of harm.
In Washington, the two major organizations that organized around I-1000 are Compassion & Choices, which supports the right to physician assisted suicide, and True Compassion, which refers to it as ‘assisted suicide.’
Robb Miller, director of Compassion & Choices, said, “The campaign started in 2007 and we did not concentrate on the ethnic minorities because we felt that we had to move the ‘moveable middle.”
This strategy was based on a survey conducted by Compassion & Choices in 2007. They did not target any ethnic groups in particular.
“Studies showed that it wasn’t going to be worthwhile to move people with strong religious affiliations,” said Miller. “We had to think about our investment of resources and we decided it wasn’t going to work to move them.’
Miller said he was not aware of the opposition’s efforts to recruit the votes of minorities either. He thought they also concluded that the number of votes to be gained by the minority populations would be insignificant.
“Also, many Hispanics do not vote,” said Miller.
The CNN exit poll for the 2008 election indicated 7 percent of voters were Latino.
Eileen Geller, the director of True Compassions, an anti-euthanasia organization, had worked to campaign against the original physician assisted suicide bill in 1991 and again in 2007-2008 as part of the Coalition against Assisted Suicide.
She said her organization “connected to get the ethnic and minority votes.”
Geller said that Eastern Washington voted overwhelming against the initiative in 1991 and that carried across the state to defeat the initiative back then. In the 2008 election, most of Eastern Washington voted no on the initiative.
Geller said the difference in campaign funding explains why the fight against physician-assisted suicide failed this time. In the 1991, the pro-campaign had twice as much funding as the coalition against physician-assisted suicide and five times as much in 2008.
“Many faith-based organizations volunteered to translate materials into Spanish and the Hispanic vote was instrumental in establishing a stronghold of anti physician assisted suicide in Eastern Washington,” said Geller. “I believe material has been translated into Tagolog in Vietnamese as well.”
George Eighemy at Compassion & Choices said it was clear that the “opposition campaign had mobilized the ethnic communities to get the vote” when the referendum was on the ballot in 1994. It had passed with a 51% to 49% margin.
Religion as a factor
The majority of Vietnamese in America are Buddhist, with a large and active Catholic minority. There are also growing Baptist and Cao Dai communities.
For many of the Vietnamese, religion was not a decisive factor in determining one’s support, or lack thereof, the Death with Dignity Act. They saw this as a personal decision.
Phi Khanh Nguyen said, “As a Catholic, I should be against this law. But I think people should have a choice.”
Dr. Thien Chan Quan, the directing monk at Nam Quang Temple in Portland said that he hasn’t met anyone to consult about this option or other end of life decisions.
“I believe that people should have the choice to opt for this,” Dr. Quan said. “However, I also believe that if 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.”
He pointed that “Buddhism allows for a choice, unlike in the Catholic church.”
Although she has heard her Catholic priests decry suicide, Thi Nguyen said she does not remember ever hearing about specific initiatives to make physician assisted suicide legal. She maintained that choosing to use the Death with Dignity Act was not an option.
“When people get old, and sick, they can only pray for comfort,” said Thi Nguyen.
Thai Quant Pham, 68 years old, is an active member in the Vietnamese Catholic community and he said he remembers his priests telling people to vote against the Imitative. Before the election, the Vietnamese Catholic Church of Washington made a proclamation to reject the Death with Dignity Act.
“The Catholic Church poured a lot of money into the campaign, and they reached out to Latino/Hispanic and Asian American communities,” said Eighemy. “The publisher of the Oregonian, who was Catholic, also vehemently opposed the referendum.”
Faith is not always a predictor of one’s voting patterns. According to a CNN exit poll of voters, 47 percent of Catholics and 49% of Protestants voted yes on I-1000.
Talking about End of Life
Although many of those I met 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 one 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 has talked about preparing for his end of life with his wife, he has yet to have the conversation with his children.
“But I haven’t talked to my children about it,” Khanh Nguyen added. “It’s not the right time. When the time comes, we’ll talk about it.”
Others have openly talked about it with their children.
Tam Hue said her seven children live scattered across three continents, Vietnam, the US and Australia. She said only her son in Vietnam did not agree with her decision to use the Death with Dignity Act, if she was terminally ill.
“My son said, ‘You can do what you want, but I think it’s weird’,” said Tam Hue.
When Marie Le talked to her children about her advance directive to stop her life if only machines were supporting her, she said, “My children all said, ‘Mom, you do what you think is best. This is probably for the best’.”
It is easier for families if the elder can issue an advance directive because no one wants to the one who makes that decision.
“Children are afraid they will be stigmatized in the community, for not having filial piety,” said Khanh Cong Nguyen.
Regardless of whether Vietnamese elders would take the option—the statistics in Oregon on Asians who used the law suggest they would not—there was a general consensus that they should be informed about all of their rights.
After our discussion, Tam Hue said, “I’m going to talk to the coordinator for the Five Wishes program. I think it needs to address the Death with Dignity Act as well. People need to know they have a choice.”
Julie Pham wrote this as part of a New America Media Fellowship sponsored by the Atlantic Philanthropies.
