Chinese NGO seeks dying with dignity by writing a living will
New association is trying to spread the importance of writing a living will in a society that still finds to hard to face up to end-of-life issues
Almost 50 years after the first living will was made in the United States, a group of prominent Chinese doctors, scholars and public servants are struggling to spread the concept in an effort to promote dignified deaths.
The Beijing Living Will Promotion Association, the first such organisation of its kind in the nation, was formally established two weeks ago after years of trying to get approval as an non-governmental organisation.
It also has a website, "Choices and Dignity", at Xyzyz.com to discuss the idea of "dying with dignity", and it has helped people register living wills online since 2006.
A living will is a legal document outlining a person's wishes regarding life or death medical decisions in the event they are incapacitated and cannot make decisions for themselves.
The association imported the concept from the United States. Chicago lawyer Luis Kutner conceived the first living will in 1967. By 1992, all 50 of the US states had passed legislation supporting the process.
"Despite China having no specific legislation on living wills, the existing civil law and contract law have secured individuals' rights" regarding wills, said Huang Xuetao, a lawyer at the Beijing Horizon Law Firm.
Still, the idea is still relatively foreign on the mainland, according to the founder of the website and vice-president of the association, Luo Diandian .
"It took seven years to get approval from the Beijing Health Bureau and Municipal Bureau of Civil Affairs because they have doubts about whether it is still too early to introduce the concept of living wills," Luo said.
The association aims to spread the concept of "dying with dignity" to all Chinese people, particularly so people can avoid the unnecessary trauma associated with excessive resuscitation attempts or prolonging the life of a person who is close to death.
When Luo's mother-in-law was near death as a result of complications from diabetes, the family made the decision to turn off life support and let her die.
As a former doctor at Beijing Union Hospital, Luo said she had dealt with life and death for most of her professional life.
Her view is shared by another member of the association, Dr Xi Xiuming, director of Fuxin Hospital under the Capital University of Medical Sciences. He said it was important to promote the concept and he had drawn up his own living will.
Xi described a common scene in hospitals, with patients connected to various tubes and machines. "To die like that - would you say that is with dignity?" he asked.
Proponents also noted that the mainland was trying to cope with limited medical resources, which made the issue of prolonging death even more pertinent.
Luo said one urgent issue that must be addressed was universal health care.
"Many Chinese think the new health-care system is incomplete," she said. "Some patients do not have health care and some simply have to spend too much."
She cited research from her organisation that found that when it came to people with full health cover, 80 per cent of medical resouces were used in attempts to save dying patients. This raised the question of whether resources would be better spent on disease prevention and treating people with curable diseases, than on prolonging inevitable deaths.
Another member of the association, Zhou Dali, said one obstacle to winning acceptance for living wills was the unwillingness of younger generations to let go of relatives. In some cases, they may want their parents to remain alive because of the benefits it brings to the rest of the family.
"Once the parents pass away, all associated privileges vanish," Zhou said, referring to children from one-child families who grew up with every entitlement. "If there's a single breath remaining in the parents, the children will not allow the tubes to be disconnected," she added.
Luo also has drawn on her experience of coping with the death of her father.
Her father, Luo Ruiqing, one of 10 founding generals of the People's Liberation Army and a politician, died in 1978. She said she had a very deep connection with her father and understood how hard it was for children to let go.
Luo said this meant she was happy that she could help others through the association's work.
For her part, Zhou was involved in health-care reform when she worked for the former State Commission for Restructuring the Economy. Some public hospitals, especially prominent ones in Beijing, spent millions of yuan a year prolonging the lives of elderly former officials.
Zhou agrees with Luo, arguing that it would be more meaningful to spend resources on people with curable illnesses, or on building hospitals in poor areas, rather than treating a person who suffers from a fatal, irreversible condition.
Only about 9,500 people have registered their living wills on the association's website since 2006, and the association is raising awareness by hosting seminars, distributing pamphlets and publishing books.
Its latest publication, Death can be Sentimental, collects more than 100 doctors' stories describing their most powerful experiences with patients who died with dignity.
Still, ending the life of a loved one is something that many people just cannot bring themselves to do, said Professor Cong Yali, who teaches medical ethics at Peking University's Health Science Centre.
Some medical experts doubt Chinese society is ready to abandon its traditions and accept the idea of dying with dignity.
"Confucius put emphasis on happiness and the value of life, while avoiding the topic of death. As a result, death has remained a taboo topic in Chinese cultural psychology," Luo said.
"That taboo is much harder to overcome compared with reforming the existing medical system."