Scribbled note gave the dying a voice
A few sentences scribbled on a note changed the trajectory of Luo Diandian 's life. It came in 2006, as her mother-in-law lay in hospital, battling end-stage diabetes. By then, her heart was no longer working on its own, she was unconscious, kept alive solely by a breathing machine.
Luo had been around disease and death for much of her professional life. She trained as a doctor and her first placement was with the Beijing Union Hospital more than 30 years ago. But taking the step of ending the life of a person that she loved was different.
But then they noticed a note from the mother-in-law, saying she did not want excessive resuscitation at the end of her life. Luo wondered how they would have handled the situation if there had been no note.
That year, Luo read Five Wishes, which detailed a practice in the United States of drafting a living will. The legal document allowed people to determine whether relatives should let them die if they become incapacitated or fall into a coma.
The idea resonated strongly with Luo and she embarked on a career of introducing the idea of "dying with dignity" to the mainland.
She gathered about a dozen friends who shared her opinion, and they held a forum in Beijing called "Seizing Our Destinies". It was attended by dozens of people, including doctors, lawyers, writers and some Chinese People's Political Consultative Conference delegates.
Not long after, they started the website "Choices and Dignity" at Xyzyz.com To date, 9,500 people have registered their living wills on the site.
The group faces a powerful cultural taboo against talking about death, although Luo made some progress in changing attitudes with a book she published in 2011, titled Who Decides My Death.
"It was well-received even though the publisher initially worried that nobody would buy it, given that its name carried the word 'death'," Luo told the Sunday Morning Post in an earlier interview, not long after it came out. "The first edition sold out within three months, and additional books had to be printed.
"What we suggest is that, when we are declared by doctors to be in the terminal stage of our lives, we don't need to be hooked up to respirators; when our heartbeat stops, we don't need CPR [cardiopulmonary resuscitation]. Don't give us expensive antibiotics, and don't let us receive other medical treatment that will cause us pain. After terminating the life-support system, we believe hospice care and the love of family members are imperative."