Advance Directives/End of Life Issues
Many Chinese may be reluctant to discuss these issues due to the superstitious belief that if you talk about something bad, it could occur ). Resistance toward organ donation may result from the concept of keeping the body whole for the afterlife, and out of respect of harming or disfiguring the deceased. Attitudes can change depending on degree of acculturation. Some elders do not want to be a burden to their children. Medical professionals need to use care and be aware of their patient’s beliefs in approaching these issues with Chinese elders or their families. It is also important to ask about whether there is an accepted family decision-maker (Yeo, 1995).
Role of Children
One study showed that Chinese older adults feel that their children may advocate for aggressive treatment out of a sense of filial duty. If children do not advocate for aggressive treatment, they can be negatively viewed as not looking out for their parents’ best interests (Bowman, K.W., Singer, P.A. 2001). According to a 2003 Chinese-American End-of-Life (EOL) needs assessment by California Coalition for Compassionate Care, most participants lacked information on EOL issues, e.g., hospice, palliative care, pain management, the dying process and Advance Health Care Directives. Many participants said they would have made different decisions if they had had more complete information at the time of the loved one’s death. Many thought their choices were essentially to insist on aggressive care or do nothing.
Ngo-Metzger et al (2008) conducted a retrospective study of the last year of life among Asian-American and Pacific Islander (AAPI) and white Medicare beneficiaries registered in the Surveillance, Epidemiology, and End Results (SEER) Program. The authors studied White (n=175,467) and AAPI (n=8,614) patients aged 65 and older who were dying with lung, colorectal, breast, prostate, gastric, or liver cancer. The authors examined hospice use and length of stay in hospice among these populations. They found that all AAPI subgroups in the study had lower rates of hospice use (Chinese (adjusted hazard ratio (HR)=0.62), Japanese (adjusted HR=0.67), Filipino (adjusted HR=0.61), Hawaiian/Pacific Islanders (adjusted HR=0.78), and other Asians (adjusted HR=0.70) than White patients, adjusting for patient demographic and clinical characteristics.
In a study of resuscitation preferences and code status among subgroups of Asian nursing home residents in Seattle (Vaughn 2000), Chinese subjects were more likely to be full code (OR 3.3 (95% CI, 2.6-4.2)), compared to Japanese and other Asian groups.
An important study by Low et al (2000) explored the choices and preferences of a group of elderly Chinese subjects attending a day care centre in Singapore with regard to end-of-life issues. The authors interviewed 43 subjects. The median age was 71 years.
Findings of the study:
- There were more women than men (58% vs. 42%).
- The predominant religion was Buddhism/Taoism.
- 83.7% of the subjects preferred to be told of the diagnosis and 76.7% the prognosis of a terminal illness, respectively.
- The person most preferred to reveal the diagnosis was the attending doctor (60.5%).
- About 84% of the subjects have never heard of the Advanced Medical Directive Act, while 37% agreed that making an advanced directive would be necessary.
- Twenty-three subjects (53.5%) would choose the doctor, while 15 (34.9%) would choose a family member as a surrogate decision-maker.
- Twenty-two subjects (51.2%) thought that euthanasia should be allowed, while 15 (34.9%) disagreed.
- With regard to supportive measures at the end of life,
- 67.4% wanted cardiopulmonary resuscitation,
- 62.8% wanted artificial ventilation,
- 55.8% wanted nasogastric feeding,
- 65.1% wanted intravenous hydration and
- 41.9% wanted renal dialysis.
In summary, there is lack of access to clear information regarding end-of-life care options and decision making, there is a need for closer and open communication between older persons and their caregivers with regard to end-of-life care, and health care professionals including physicians have an important role in this respect.