1. Nicoll, Leslie H. Editor-in-Chief

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Sandy Chen Stokes is arguably Northern California's most active, end-of-life care advocate for Chinese Americans. As with so many advocates for quality end-of-life care, a bad personal experience sparked her impassioned approach.


Her bedridden father, who lived in Taiwan and had been suffering with cancer for 10 years, developed complications and was rushed to the hospital. There, after suffering a heart attack, he was revived with CPR-against Stokes' wishes-and spent the next year in the hospital's critical-care unit before dying. "Do-not-resuscitate orders (DNRs) are illegal in China so we could not help my father or prevent his struggles during that last year," explains Stokes, a clinical nurse specialist with expertise in geriatric psychiatry. "It reminded me that I am lucky to live in the United States, where I have the power and the right to decide how I want to live the last part of my life."


Stokes recalled this thought again later, when her Catholic Charities job in San Jose introduced her to an elderly Chinese man suffering from depression and severe anxiety. "He had been his wife's caregiver before she died of colon cancer," Stokes notes. "Her pain wasn't managed properly, her doctor didn't refer her to hospice, and the husband felt hopeless as he watched his wife die in great pain. He suffered from this trauma-and worried about his own fate-for three years before being referred to our program," she says.


These experiences convinced Stokes that Chinese Americans needed to know more about quality end-of-life care; only 5% of Asians in the United States are ever referred to hospice, she notes.


Stokes says that cultural pressures contribute to the low referral rate. "Talking about death is taboo in the Chinese community," explains Stokes, who is a native of Taiwan and who recently accepted a position with the Sacramento Public Health Department.


"[We Chinese Americans] say too little to our doctors about our health problems, preferring instead to just do what the doctor tells us," Stokes says. She adds that this silence inhibits open conversations between doctors and their Chinese-American patients about hospice referral and other end-of-life topics.


A lack of training among providers coupled with language barriers make the situation still worse. "We really need more information about end-of-life topics [to be] written in Chinese," Stokes notes. She made a huge step toward making this happen when she volunteered to translate California's advance directive form into Chinese.


Now she conducts workshops for Chinese Americans on how to complete the document and use it to initiate end-of-life care conversations with doctors, healthcare agents and family members. And, in 2001, as president of the American Cancer Society's Northern California Chinese Unit, she spearheaded a campaign to develop end-of-life materials for Chinese cancer patients and their families. The resulting Quality of Life handbook, written in both Chinese and English, addresses advance directives, pain management, hospice care, and bereavement.


Stokes also recently helped a hospice secure funding to train volunteers to work with healthcare providers and patients to increase referrals to hospice for Chinese Americans. "We have a responsibility to provide that education if they don't seek it themselves," she asserts.


But her most far-reaching accomplishment in recent months is last fall's publication of Partnership for Caring's Finding Our Way, the 15-part news series on end-of-life issues, in the national newspaper for Chinese-American audiences, World Journal.


In addition to presenting the series to the paper's management team and arranging for the articles' translations, Stokes also convinced the Journal's San Francisco edition to run a companion series of local articles. In addition, she extended the series' impact through interviews about advance-care planning and other end-of-life topics with the area's Chinese-language broadcasters.


"Chinese Americans seem interested in learning about end-of-life issues from respected health professionals who speak their native language," says Kathy Glasmire, chair of the California Coalition for Compassionate Care's public-outreach initiative, which partnered with Cancer Society to develop the Quality of Life handbook. "They have that-and more-in Sandy Stokes."