Esther Luo, MD, of Kaiser Permanente in Santa Clara, said Chinese families avoid palliative care for lack of information on how it can ease the end of life.
SAN FRANCISCO–While Chinese culture has its particular perspective on death and dying, there are many challenges for Chinese people to use palliative and hospice care.
One of the main issues is that most Chinese people may avoid discussing death for fear of invoking bad luck. Another is about filial responsibility since most Chinese family members are expected to provide care for the dying family to fulfill filial responsibilities.
Esther Luo, outpatient palliative care physician at Kaiser Permanente Santa Clara Medical Center, in Northern California, said palliative treatment helps patients feel relaxed and comfortable in their final phase of life, but many Chinese view palliative and hospice service as a dumping ground where their families are left to die.
According to a 2010 study in the New England Journal of Medicine, palliative care services led to significant improvements in patients’ quality of life, reduced rates of depression, minimized “aggressive” care in the last weeks of life, and added an average of 2.7 months in expectancy more than dying patients who did not receive palliative care.
Luo said, “Only few Chinese people know hospice and palliative care, which is one of the main reasons why they forego such care.”
She also mentioned that when elderly or disabled Medicare patients are diagnosed with less than six months to live, they can be covered for hospice services. However, according to a 2012 report from the National Hospice and Palliative Care Organization, shows that among hospice patients in the United States 85 percent were white, while only four percent were Asian.
V.J. Periyakoil, MD, director of Stanford Palliative Care Education and Training Program, said Chinese people usually have a big family and have a tightly knit relationship with relatives. While they may sometimes discuss using hospice services or not, the subject often causes huge arguments between family members, who could possibly stop the patient from opting for hospice.
Talking About Death Most Difficult
Zhao Ruting, director of the Chinese Americans Coalition for Compassionate Care (CACCC), said, “Talking about hospice service and death with parents or seniors is the most difficult thing.”
Zhao, who helps to improve hospice service for the Chinese community, said even she was worried about being criticized for “bad mouthing” responsibility to one’s elders or not being a “filial kid” when she discussed hospice care with her mother.
Nowadays many seniors are educated to know more medical information to help them understand the benefits of palliative and hospice care. They are learning about tools and programs that can help people make their end-of-life wishes known, even if they are in a coma or become too ill to speak for themselves.
These include: palliative treatment (best begun well before hospice in needed toward the end of life) and hospice care.
People should also fill out a Physician Orders for Life-Sustaining Treatment (POLST) form, which must be signed by your doctor; and fill out an advance health care directive, in which you can give more detailed information about your wishes and make them known to than your children or grand kids.
Kaiser Permanente’s Luo, who was born in China but raised in the United States, compared Western and Eastern cultural differences in reaction to death. She explained that Western culture generally is more open to discuss death and accept hospice service.
However, most Chinese people are hesitant to use hospice care because of limited information or misunderstandings about it. Some worry their family could not receive customized services, such as receiving Chinese meals and Chinese-speaking providers from hospice programs. In truth, though, hospice is typically provided at home and a family member acts as the primary caregiver, supervised by professional medical staff.
Hospice teams includes the patient’s physician, a palliative care doctor, a case manager, registered nurses and licensed practical nurses, a psychological counselor, a dietician, therapist, social worker, pharmacologist, a spiritual adviser and various trained volunteers. The palliative care team develops a care plan tailored to a patient’s individual need for pain management and symptom relief, and provides all the necessary palliative drugs and therapies, medical supplies and equipment.
Richard Lee wrote the original version of this article in Chinese for the World Journal through a California Healthcare Foundation Journalism Fellowship, a project of New America Media in collaboration with the Stanford In-reach for Successful Aging through Education Program. English translation by New America Media’s Summer Chiang.
About Richard Lee
Richard Jung Lee, Reporter, World Journal (San Francisco). A reporter for 10 years, Lee joined the Chinese-language daily World Journal in 2010 and is currently assigned to the bay area news section, where he has covered education, business and health issues. In 2011, he worked collaboratively with New America Media’s “A Day in a Life of a Classroom” project, which won top honors in the 2011-2012 Society of Professional Journalists Excellence in Journalism Award competition. He received an master’s degree from E.W. Scripps School of Journalism at Ohio University and has a bachelor’s degree in journalism from National Chengchi University in Taiwan.