Photo: 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
How Chou-Yibing Xiao
Died with Dignity
"My Mom never followed doctors’ orders. She told me that she wanted to keep her sense of dignity even though she was in the final phrase of her life," recalled Ya-lu Xiao, an immigrant from Taiwan now living in Cupertino, Calif.
Xiao’s mother, Chou-Yibing Xiao, was diagnosed with renal failure, but she insisted on not receiving further treatment in a hospital. Chou-Yibing Xiao, 85, had been unwilling to see a doctor, and she even threw western medicine away. She only believed in using Chinese folk therapy, but it did not help her get better. Eventually she had to go on kidney dialysis.
“Because of my mother’s bad attitude toward the hospital and the doctor, the doctor suggested that we move her into palliative care,” Ya-lu Xiao said. But it was a very difficult decision for a Chinese family.
“There were a lot of arguments between the family members. Several young relatives even questioned me and asked, ‘Don’t you think it is your responsibility to take care of your mother? Why are you trying to shirk your filial responsibility?’”
After long discussions with her family, especially her two sisters, who live in Canada and Taiwan, Ya-lu Xiao decided to try palliative medicine and, as her mother’s illness became terminal, hospice care.
The hospice care team visited Xiao in her retirement community once a week and chatted with her. The team also allowed her to have small amounts of her favorite foods, such as fried tofu, stewed duck, and glutinous rice, even though those dishes may not be good for her kidney.
Chou-Yibing Xiao’s mood improved and her emotional state became stable. Ya-lu Xiao said, “My mother became happy and she was excited as a little kid every time she had the [palliative care] service.”
With the team’s help, Xiao filled out a Physician Orders for Life-Sustaining Treatment Orders (POLST) form and a more detailed advance health care directive to make her wishes clear about the treatment she did or did not want at the end. She spent her last days with the prayers of a priest and surrounded by her family. Ya-lu Xiao believes that using palliative care or hospice does not mean giving up on your family or stopping needed treatments, but bringing more professional care to a patient. “I saw my mother have a peaceful time in her last stages of life.”
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 grandkids.
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. Click to read the Chinese-language originals of this article and sidebar.