Volume 1, Issue 11 - January 1999

Writing Personal Directives: The Chinese Perspective

In recent years, the number of people of diverse cultural backgrounds has increased dramatically in this city. In an attempt to learn about cultural perspectives regarding medical treatment and to provide better services for people of various cultures, the Multicultural Program Department at the Royal Alexandra Hospital in Edmonton initiated a study which aimed to investigate possible concerns the Chinese community, one of the largest cultural groups in the city, may have toward the utilization of Personal Directives. The overall goal of the project was to examine Chinese attitudes concerning the writing of Personal Directives.

The Study

This study was conducted through interviews with focus groups consisting of between 10 and 35 people. Of the 100 people sampled, 86 participants were over the age of 50, and classified as belonging to "the older generation of Chinese Edmontonians", as all expressed traditional Chinese values concerning health care and death. The rest of the participants, between the ages of 25 and 45, were classified as belonging to "the younger generation", as most expressed having incorporated Western ideals and retained fewer traditional beliefs regarding medical treatment. The majority of the participants emigrated from Hong Kong. The religious backgrounds of the individuals varied, including those who followed Buddhist, Confucian, and other traditional Chinese belief systems.

The Findings

Members of the younger generation tended to welcome the opportunity to state their beliefs concerning medical treatment in writing, whereas the older generation were more likely to shun the idea of cogitating on issues about life and death. Thus, the older generation were not inclined to write personal directives. One of the primary reasons for this was the prevailing belief that thinking about these contingencies is considered a bad omen and is fated to lead to bad luck. In addition, due to the strong acceptance of hierarchical social systems, many Chinese believe strongly in authority figures. As a result, most elderly Chinese are unwilling to make medical decisions themselves and would rather leave them to doctors, who are seen as the experts in this area.

Another factor which inhibits the elderly Chinese from writing personal directives is the fact that end of life decisions are discussed only with members of the family. Maintaining the privacy and secrecy of these decisions is paramount in light of the belief that open discussion of these topics might lead to fulfillment of the negative contingencies mentioned in the directive. So, on the one hand, this generation is only comfortable leaving these decisions to the medical experts, while on the other, discussion can only happen with family. Hence, these two factors result in little chance for the traditional Chinese to learn about their health care options or about writing effective personal directives.

Assisted Suicide

Although the younger and older generations expressed different opinions about the value of writing personal directives, both groups seemed to believe that personal directives are important for offering people the opportunity to refuse medical treatment when there can be no improvement in the patients' medical condition. However, the research subjects generally felt that the Personal Directives Act is too restrictive as some practices, such as doctor-assisted suicide, cannot be included in the directive.

According to the members of the Chinese community interviewed, mercy killing is seen as the ultimate act of strength and compassion. The doctor and family members who aid a terminally ill patient to commit suicide are regarded as acting honorably because they would be following the wishes of the patient even though the act would bring grief and sadness to the family. Helping a beloved family member end suffering is seen as a demonstration of the family's unselfishness and willingness to place the patient's needs ahead of the feelings of the rest of the family.

It was suggested that suffering patients who require much care would be relieved that they would no longer be a burden to the family. It was also indicated that the Chinese, being a family-oriented people, find it callous to leave a family member hospitalized for prolonged periods of time, isolated from family and friends. To be in a vegetative or unproductive state was seen as worse than being dead.

Buddhist Perspectives

Although a large number of Chinese elderly may be opposed to writing a personal directive, those who follow the Buddhist way of life seemed to regard personal directives as the perfect instrument for an individual to affirm faith and weave one's personal destiny. Buddhists value self-determination highly and praise those who decide when and how they will die. The moment of death is especially important to these individuals as the thoughts and behavior of the Buddhist at this time play a large part in determining the manner of reincarnation to the next life.

For Buddhists, one of the most critical statements that would need to be included in the directive is the refusal to donate or accept donated organs even if the refusal meant death. This stems from a strong belief in non-violence against fellow humans and other animals. Any act that results directly in death is anticipated to cause both the actor and the beneficiary to accumulate negative karma. This accumulation will then bind both individuals to the cycle of samsara (continual re-birth) which prevents them from reaching the Pureland "Paradise". Even for the Chinese who were not Buddhists, the idea of donating or receiving donated organs was abhorred. It was expressed that a body has to be buried whole in order for the soul to find peace. Therefore, any disfigurement or missing body parts will leave a tormented soul drifting eternally in the realm between the living and the dead.

Conclusion

When it comes down to actually writing a personal directive, few members of both generations expressed the willingness to devote the time and careful thought necessary to produce an effective directive. For those who have deeply entrenched traditional Chinese beliefs, the adage that, "...one cannot change fate, therefore one has to accept it..." was understood to apply. These individuals concluded that one cannot enjoy life as fully as possible if one tries to think and worry about what to do when a medical emergency occurs.

The Chinese interviewed strongly believe that nature is a formidable force and that one should try to coexist with it rather than attempt to alter its course. Even among those who found merit in writing a personal directive, most suggested they would write one only when unexpected health problems arose. They would put off the act until then because they did not find it to be a priority in their lives. They do not like to think about their own deaths, and postponing the documentation of medical contingencies would make them appear less inevitable.

Introducing ... The Board of PHEN

As the opportunity presents itself, we would like to introduce to the Network members of its Board of Directors. In this edition we are pleased to feature Board Chair, Campbell Miller, and Vice-Chair, Hazel Anaka

Campbell Miller, Q.C., was the Chair of the Capital Health Authority from June 1994 to June 1996. This RHA is responsible for the health services provided to the Cities of Edmonton, St. Albert and the County of Strathcona; which were undergoing a major health reform process. Previously, he chaired the Capital Care Group Board and served on the Edmonton Region Health Facilities Planning Council.

Mr. Miller received a LL.M. from the University of Cambridge, a LL.B. from the University of Ottawa and a Bachelors in Business Administration from Bishop's University. He is a partner in the law firm of Bishop and McKenzie, where he specializes in taxation and corporate law. Campbell Miller is an active community member and is married with two children.

Hazel Anaka, is serving her second term as a Board Member of the Lakeland Regional Health Authority #12. She is a member of several committees including the Lakeland Regional Ethics Committee.

Hazel received a Social Service Worker Diploma from Grant MacEwan Community College, a Communications Skills Certificate from NAIT, and has completed several marketing, public speaking and personal development courses as well. Hazel has owned and operated a flower and gift shop for the past 13 years. She is married with two children.

Announcements

• The personal directives session co-sponsored by PHEN and the Office of the Public Guardian that was scheduled to be held in Red Deer on January 12, 1999 has been rescheduled for the evening February 17, 1999. An additional session has also been scheduled to take place in Olds, Alberta on the same date. To register for either of these sessions, or for more information, please call (888) 343 - 4553.

• A reminder that as of January 25, 1999 the area code for PHEN's Edmonton office will be changing from 403 to 780.

Views offered in this article are those of the author and do not necessarily reflect the position of the Provincial Health Ethics Network.