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UPDATED: October 6, 2013 NO. 40, OCTOBER 3, 2013
Dying With Dignity
Living wills are giving people the right to make decisions about their end-of-life care should the situation arise
By Yuan Yuan
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"Death is a big thing for everybody, and as long as a person is still breathing, other people consider them to be alive," said Chen Xiaolu, who co-founded the website Choice and Dignity with Luo.

Chen Xiaolu's father, Chen Yi (1901-72), former Vice Premier and Foreign Minister, spent his last days in hospital and suffered greatly during his cancer treatment.

"As soon as a person has a terminal illness, the family members' first reactions are normally to spare no effort and use the most expensive treatment and medicine available to prolong his or her life," Chen Xiaolu said. "But maybe that is not what the patient wants."

Facing taboos

After setting up the website, Luo frequently goes to hospitals to spread the idea of making a living will and how it can help a person die with dignity, but the feedback is mostly negative.

"Hospitals are considered to be a place that can cure people and bring the dying back to life. Even though many people pass away in hospital, people would prefer to ignore that," Luo said.

In Luo's eyes, education on death is a must for the Chinese people as it is the natural end for everybody, but many people refuse to face it rationally. "We are always told how precious life is but seldom taught how to face death. We need to learn to face it with a peaceful frame of mind, and not to fear it," she noted.

But Luo said she doesn't expect that life education can be spread universally or accepted quickly. "It is not practical in China. We just want more people to think about it and gradually we can talk about death in a rational and level-headed manner," Luo said.

Weng Li, a physician at Peking Union Medical College Hospital in Beijing, revealed that relatives are inclined not to tell patients about their terminal illness, which makes the execution of living wills more complicated.

"Chinese doctors seem to be 'bound by sensitivity' to conceal the painful reality from their patients," Weng said. "It's a cultural issue, but when it comes to writing a living will, the underlying contradiction is: How can you ask someone to seriously consider the option, while making every effort to convince him or her that they are not going to die?"

Weng said that neither the doctors nor the relatives should be blamed. "For the majority of Chinese people, death is still too frightening a thought to face head on. You might be doing the patient a disservice by plunging them into an ocean of fear where they will simply drown," he said.

"Ask a patient whether he or she wants to live or not and that person will most definitely say yes. But if you change the question to whether he is willing to endure this or that in order to live just one more week, you might get a different answer. With all their professional knowledge, empathy and skills, doctors can take a role in guiding patients and families, even from behind the scenes," said Liu Duanqi, a former director at the Oncology Department of the Military General Hospital in Beijing.

Having seen more than 2,000 cancer patients die under his care over the past 40 years, Liu is a strong advocate of the "dying in dignity" campaign.

The reluctance, or possibly the inability, of many Chinese doctors to engage patients and their families in a sensitive and meaningful discussion about the range of possible choices and potential results often leads to unfounded hope, sudden disillusionment and ultimately anger and despair, according to Liu.

"Despite their general feeling of being wronged, these doctors have, in effect, robbed their dying patients of their last opportunity to make sensible, well-informed decisions," he said. "And for people with high-level medical insurance, to prolong the process of death at the taxpayers' expense constitutes, for me, a form of social injustice."

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