Mu Zhixia discovered the lump in her left breast on an unseasonably warm night in March of 2014. At twenty-seven, she was strong and healthy, and hadn’t seen a doctor since giving birth to her son, Xuan, two years before. But her mother, Sulin, told her not to take chances and marched her to their local hospital, in Pingding, a small city in the province of Shanxi. A doctor conducted a swift examination and wrote a prescription. “Doesn’t she need a scan?” Sulin asked. “No need!” the doctor responded. “The medication will be enough.”
Zhixia dutifully took the pills, but after a few months the lump was still there, so Sulin accompanied her to a hospital in Yangquan, a nearby industrial city of 1.5 million people. The doctors said that she needed immediate surgery. As is typical with dire diagnoses in China, they did not tell Zhixia that she had breast cancer, informing only her mother. Sulin, in turn, assured her daughter that the growth was benign.
After the operation, a biopsy revealed that the cancer had spread. The doctors put Zhixia on a course of chemotherapy, and she was hospitalized for several weeks. A year later, the cancer returned, and the doctor who had prescribed the chemo remarked casually that if they had followed it up with radiation the outcome might have been better. Sulin wanted to know why they hadn’t done that, but she felt too intimidated to say anything.
In the next three years, Zhixia had four more long stays in the hospital, emerging frailer each time. The cost of her treatments, a hundred thousand yuan (almost fifteen thousand dollars), plunged the family into financial crisis. The cancer progressed to her lymph nodes, her lungs, her bones. Her body became so ravaged that she was almost unrecognizable. When her son was taken to visit, he had to be prompted to call her Mother.
Shanxi is in the heart of China’s coal country, and has disproportionately high rates of esophageal and lung cancer. Zhixia was only five months old when her father, a farmer, died of esophageal cancer. (Sulin remarried, but her second husband succumbed to lung cancer.) Still, Zhixia grew up to be a sunny, optimistic woman. Moonfaced, with high cheekbones, she liked to say that she met her father whenever she looked in the mirror. She quit school after seventh grade and worked various jobs to help support the family. When she was twenty-five, she met her husband, a coal miner named Zhang Wei.
Three years into Zhixia’s illness, in the spring of 2017, Wei felt a pain in his back so severe that he couldn’t lift up their son. He didn’t go to a doctor: caring for Zhixia left little time, and he figured that he’d hurt himself while swimming. Two weeks later, the pain was so bad that he couldn’t get out of bed. When he finally went to a doctor, he was informed that he had a blood disorder. The doctor, who suspected late-stage leukemia, told him to check in to the hospital right away. Wei said that he needed to keep working, to pay for his wife’s treatment.
Wei died on a brisk fall day, three months later. What pained Zhixia the most was knowing that he had been alone at the end. His mother was too distraught to enter his hospital room, his father had been at work in the coal mines, Zhixia had been receiving another round of chemo, and her own mother was busy caring for Xuan. In the days after, Zhixia told her mother, “Please don’t let me die.” By then, she knew that she had cancer: her father-in-law, who was illiterate, had inadvertently let her see one of her medical reports.
Zhixia’s doctors told Sulin to begin thinking about funeral arrangements. In desperation, she started asking around about other medical facilities, and a neighbor told her about a man named Li Youquan, who had opened a small private hospital on the outskirts of Yangquan. Its name was Yangquan You’ai Hospital—you’ai means “friendship and love”—and it had a unit devoted to hospice care, a concept still unfamiliar in China.
Few cultures relish talking about death, but in China the subject remains taboo. Mentioning it is considered so unlucky that dying people are often reluctant to discuss arrangements with their families or even to make wills. (Last year, “The Farewell,” an American film about a Chinese family that uses a wedding as an excuse to gather around a terminally ill grandmother without arousing her suspicions, was a breakout hit in the West, but it was largely ignored in China, where such stories are commonplace.) As a result, fewer than a hundred and fifty institutions specialize in end-of-life care, in a country where nearly twenty per cent of the population—a quarter of a billion people—is sixty or older. The U.S., with some seventy million people over sixty, has more than fifty-five hundred such institutions.
In China, the family has traditionally provided care for the vulnerable: “Raise a child against old age; stockpile grain against famine,” one proverb counsels. Confucian expectations of filial piety remain strong, but for most Chinese they have become increasingly difficult to fulfill. Dizzying economic expansion has made China’s population ever more mobile, and the one-child policy, in force from 1979 to 2015, means that many adults have no siblings with whom to share the burden of caring for relatives. Hundreds of millions of workers who have moved to the country’s booming cities cannot do much more for aging parents back in remote villages than wire whatever money they can spare.
Rural areas also lack adequate public-health services. Close to half the population lives in the countryside, but about eighty per cent of China’s medical facilities are concentrated in cities. Health-care costs have risen sharply in recent years, and Chinese patients must navigate a byzantine system of government coverage. Most people have basic insurance, but anything beyond routine care usually requires steep out-of-pocket payments.
The early stages of the coronavirus pandemic brought to light some of the dysfunctions of China’s medical system, including underinvestment in primary-care clinics and overreliance on huge, rigidly bureaucratic urban hospitals. But, if the coronavirus exposed the country’s health-care challenges in their most acute form, the quieter crisis in end-of-life care reveals a chronic underlying condition, whose symptoms are at once brutally economic and deeply cultural. Prosperity and medical advances have transformed the way Chinese people live, but they have done little to address the question of how they should die.
Li Youquan named the Friendship and Love Hospital for an earlier iteration, which was founded, like most of China’s first hospitals, by Western missionaries. American representatives of the Church of the Brethren arrived in the area in 1910, and their hospital trained generations of doctors and nurses. It closed not long before the Communists came to power, in 1949, and expelled foreign missionaries. But, as Li told me when I visited him last summer, almost everything in China runs in cycles: “Sooner or later, what was banned will be reborn.”
Li is a sturdily built man in his early fifties, with alert eyes set in a frank, expressive face, and he comes from a family of farmers. His route to providing palliative care was a circuitous one. In the late eighties, he attended a vocational school that specialized in traditional Chinese medicine. After graduating, he left traditional medicine behind and did an internship at the largest hospital in Yangquan, where he encountered an ultrasound machine for the first time, and was amazed. “In Eastern medicine, there is so much interpretation and guesswork,” he said. “But with ultrasound you could actually see inside a patient’s body.” After scraping together enough money to buy a machine, he started operating a clinic out of his house, near the village where he was born. Charging a couple of dollars per scan, he found that there was good money to be made detecting tumors and pregnancies.
