In U.S. writer Mitch Albom’s bestseller “Tuesdays With Morrie,” Morrie Schwartz, the writer’s favorite college professor who had long suffered from Amyotrophic Lateral Sclerosis and was in the last days of life, told his student: “Once you learn how to die, you learn how to live.”
Last week, a death-related topic — living will — stirred up a nationwide discussion on social media in China, where death has always been one of the most tabooed topics, and enticed people to ponder about their attitudes towards end-of-life care and death. Hopefully, this discussion on the choices we have when planning for our last days can lead to a deeper reflection on the way we live our lives.
In a revised draft of the “Medical Regulations of the Shenzhen Special Economic Zone,” Shenzhen made a legislative breakthrough to become the mainland’s first city to give legal recognition regarding a living will. That means in cases where terminally-ill patients have stated their preferences for medical care at the end of their lives, their wishes are protected by law. Both family members and medical professionals will need to respect these wishes, even if these might include refusal to excessive life-extending or life-saving treatment.
Wang Ying, chairwoman of the Beijing Living Will Promotion Association, the first such organization on China’s mainland, called the revision a milestone in the country’s effort to promote dignified deaths.
A living will is a legal document outlining a person’s wishes regarding life and death medical decisions in the event they are incapacitated and cannot make decisions for themselves. The concept was conceived by Chicago lawyer Luis Kutner in the United States in 1967. By 1992, all 50 of the U.S. states had passed legislation supporting the process.
On the mainland, the effort to promote dying with dignity began late, but according to Luo Diandian, founder of the website Choice and Dignity, progress has been impressive. Luo, a former doctor at Beijing Union Hospital and daughter of the founding general of the People’s Liberation Army Luo Ruiqing, launched the website in 2006 to discuss the idea of “dying with dignity,” the first website of its kind on China’s mainland. The website also helped people register living wills online. Seven years later, the Beijing Living Will Promotion Association was formally established as a non-governmental organization.
Shenzhen followed suit to set up the mainland’s second living will promotion association in April 2021, and in June voted to recognize the legitimacy of living wills. Under the revised regulations, a patient can choose to make a living will that clearly states he or she does not want to receive treatment, such as intubation or cardiopulmonary resuscitation, or be placed on life support, and medical workers should respect that decision. The new regulations will take effect Jan. 1, 2023.
The benefits of making a living will are obvious: It gives guidance to doctors and healthcare professionals; it provides clarity to the patients’ loved ones; and it prevents conflicts or disagreements among family members, and reduces the emotional burden on the people who are closest to the patient at the time of death. Most importantly, it gives people a sense that they remain the captain of their own ship, with certain authority to decide how they want to live and die. Given the fact that most people on the deathbed might fall into unconsciousness or become unable to speak, the living will can serve as their voice when they otherwise may not have one.
Shenzhen’s pilot practice met with positive feedback across the country. As of Sunday, more than 30 topics on Sina Weibo, China’s Twitter-like platform, were related to the regulation, and one topic — “legislation on living will for the first time” — had received around 28 million views. In the comment session, many applauded the new rule for protecting the patients’ dignity and right to make end-of-life decisions, as well as solving a predicament that has long affected dying people and their family members.
Besides the dignity and decision-making right bestowed to patients, the significance of the local legislation also lies in its effect on the implementation of living wills.
Despite the fact that there was no specific legislation on living wills on the mainland before the Shenzhen practice, China’s existing civil law and contract law have secured individuals’ rights regarding wills. However, in most cases regarding people’s preference for end-of-life care, doctors hesitate to act according to the patients’ wills in fear of rejections from the patients’ families. In her April interview with Hong Kong-based Phoenix TV, Luo admitted that without legislation or hospice care services, living wills could hardly be realized. “More than 50,000 people have registered their living wills on our website since 2006. But honestly speaking, people’s wishes may not be realized once denied by the medical service providers,” she said. “Legislation can help clarify the responsibilities of doctors and protect them from the potential legal disputes with the families of patients.”
While the sense of authority over the arrangement of end-of-life planning might be a comfort to many, it is reasonable to doubt how much it would help to ease the pains when dealing with death, perhaps the most important life issue, for both the patients and their families. But to long-time advocates of living wills like Luo, drawing people’s attention to this topic is rewarding enough.
“May it be fear or sadness, once you pause for a while and spend some time thinking about death and make preparations for it, you might be surprised to find yourself a wiser and freer person than you’ve imagined. It would be a fascinating experience that will make a difference to your life,” she said.