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2018-04-03 11:36:44

This article is part of a series on how Chinese people deal with death.

SHANGHAI — Four years ago, when Qiao Qiao was told that her mother had been diagnosed with late-stage cervical cancer, she was overwhelmed. Chinese doctors often break the bad news to family members rather than to the patients themselves, and Qiao had no idea how to inform her mother. “I didn’t know how to comfort her, nor did I know how to deal with my own emotions,” Qiao says.

The fact that her mother didn’t want to talk about it at all only made things worse.

Death is the biggest taboo topic among Chinese people. Merely mentioning mortality is believed to beget bad fortune, bringing the inevitability closer than it perhaps already is. Parents refrain from broaching the subject with their children to protect them; people pay extra for cellphone numbers without the digit 4, which sounds like the Mandarin word for death; and few people register as organ donors or write their own wills for fear of cursing themselves. When tragedy does strike, many people find they haven’t the slightest idea how to handle it.

Cancer is like an earthquake for each family; it shocks and destroys the family relationships and the routine of daily life.

Qiao, who was 23 when her family learned of the cancer diagnosis, recalls that her gravely ill mother refused to talk about anything related to her own mortality. She didn’t want to discuss writing a will, Qiao tells Sixth Tone, “and she never clearly said how she would like to be buried.” Qiao took her mother to several hospitals for chemotherapy, but it didn’t seem to have any positive effects. She wasn’t sure whether to continue the treatment and had trouble getting advice from their doctors, but her mother insisted — the prevailing attitude in China is to opt for increasingly aggressive treatment when someone’s health is failing. Hospice care is rarely considered an option.

Feeling desperate and hopeless about dealing with her mother’s illness all by herself, Qiao — an only child raised by a single mother — began looking for help online in late 2016. She got in touch with Wang Ying, who runs Hand in Hand, a Shanghai-based nonprofit that specializes in providing psychological counseling to cancer patients and their relatives.

When Wang received Qiao’s message, she paid a visit to the young woman and her mother that same day. Wang told Qiao that she needed to start planning the funeral, as her mother was unlikely to last another week. Wang suggested that Qiao make use of every second to talk to her mother while she was conscious, and also told Qiao not to place her mother’s hands on her stomach, saying it made breathing more difficult. Qiao had finally found the help she needed, but it was too late. “My mother died the next day,” she says, in tears.

Wang Ying hosts a ‘death café’ event at Modern Art Museum in Shanghai, Dec. 23, 2017. Courtesy of Modern Art Museum Shanghai

Wang Ying hosts a ‘death café’ event at Modern Art Museum in Shanghai, Dec. 23, 2017. Courtesy of Modern Art Museum Shanghai

Wang became a counselor after her own mother battled — and survived — cancer more than a decade ago. Initially, doctors said her mother had less than a year left to live. Wang remembers how upsetting it was not knowing what to do. “The doctor didn’t explain what other options there were besides treatment,” Wang tells Sixth Tone. Luckily, Wang, now 39, found ways to comfort her mother and handle her own feelings. “I felt that if I could do something to help families like ours, it would be meaningful,” says the Shanghai native. She decided to study psychology.

After a powerful earthquake struck Wenchuan, in southwestern China’s Sichuan province, in 2008, Wang volunteered to provide psychological aid to survivors. Shortly afterward, she and another volunteer from Shanghai founded Hand in Hand. Their volunteers now offer counseling at six Shanghai hospitals, visiting wards at set times to talk to anyone in need of a conversation. Many patients find it easier to speak to strangers. “Cancer is like an earthquake for each family; it shocks and destroys the family relationships and the routine of daily life,” Wang says. “They need someone to give them a hand during the rebuilding process.”

A volunteer puts his handprint on a banner at Hand in Hand’s training event in Shanghai, March 3, 2018. Fan Yiying/Sixth Tone

A volunteer puts his handprint on a banner at Hand in Hand’s training event in Shanghai, March 3, 2018. Fan Yiying/Sixth Tone

Wang has noticed that patients and their families and friends are often completely unprepared. Many children have no siblings with whom to share the burden of caring for a sick parent. Wang says the biggest problem lies in the lack of what she calls “death education” — lessons about the social and emotional aspects of dying.

Chris K. K. Tan, an associate professor of anthropology at Shandong University in eastern China, traces the reluctance to discuss mortality matters to Confucianism, which barely touches on what happens after death. As Confucius once explained, “If you don’t understand what life is, how will you understand death?” Says Tan, “Confucianism doesn’t set up a philosophical foundation for Chinese people to talk about death — unlike the Bible, which makes it clear that a good person will go to heaven after they die.”

Confucianism doesn’t set up a philosophical foundation for Chinese people to talk about death.

There is also a litany of superstitions — such as that the deceased’s souls can influence the world of the living — that make death a topic best left untouched. “Death and funerals are considered inauspicious in China, and the idea of evil spirits keeps people from talking about it,” Tan says.

Before she founded Hand in Hand, Wang says she, too, was reluctant to discuss death. “Fear comes from the unknown,” she says, adding that the taboo gets passed down from generation to generation. When she was a teenager, she witnessed her parents and other elder relatives crying their eyes out at her grandparents’ funerals, but she wasn’t allowed to get too involved in the process, as funerals were considered too distressing for children. “I wish I had known how to offer emotional and spiritual support before [my grandparents] passed away,” she says.

The first few years were tough for Hand in Hand. People questioned the volunteers’ motives or wondered whether the organization was a cult. But a continuous increase in cancer patients — with the number more than doubling in China between 2000 and 2015 — has led to more acceptance of death counseling. Now, people like Qiao actively seek out Hand in Hand for their services, and every quarter sees more volunteers applying to join the organization.

In addition to providing end-of-life care to cancer patients, Hand in Hand also organizes lectures, workshops, and so-called death cafés — a form of gathering that originated in Europe, where participants discuss dying over beverages and snacks. Cai Ling, who attended the most recent session in December, enjoyed discussing the topic with open-minded people. “I hope such events will be the spark that starts the fire for a future where talking about death is no longer taboo,” says the 24-year-old.

A display showing ancient funeral practices at Shanghai Funeral Museum, March 3, 2018. Fan Yiying/Sixth Tone

A display showing ancient funeral practices at Shanghai Funeral Museum, March 3, 2018. Fan Yiying/Sixth Tone

The Giving Tree, another nonprofit in Shanghai, began offering “life education” courses to children in 2009. Currently, the organization teaches courses at around 30 primary schools in the city. The curriculum takes a gradual approach to discussing death. “It’s hard for children to accept it if we just get right to the point,” says Chunzhen Lee, a Taiwanese teacher for The Giving Tree. For children in lower grades, the educators begin by talking about dying plants and pets. Then, they can move on to a picture book that tells the story of Grandma Erma, who calmly deals with being seriously ill. “Perhaps very soon, I won’t be able to walk or eat, but it’s just my body getting ready for a long, faraway journey,” Erma says with a calm expression on her face. The most important lesson, Lee explains, is teaching children to cherish the present and look to the future, turning sadness into something positive.

It’s a message that wouldn’t be lost on Qiao, who was devastated about her mother’s passing for over a year. “I felt like nothing was meaningful,” she says. But she kept in touch with Wang, and eventually, grief gave way to motivation. Last year, she started her Ph.D. in cancer research in the U.S., hoping to one day make discoveries that could help people like her mother. Her one regret is not learning about how to deal with death sooner. “If I had known Wang earlier,” she says, “my mother wouldn’t have died in so much pain, and I wouldn’t have felt so lost.”

Editor: Kevin Schoenmakers.

(Header image: A boy carries a bouquet as he and his family go to tend their relatives’ graves at a public cemetery in Shanghai, March 24, 2018. Shi Yangkun/Sixth Tone)