Demand for palliative care outstrips supply
Cultural concerns and outdated health regulations are impeding the development of a national network of clinics. reports.
Most of the patients received by physician Qin Yuan, director of the hospice ward at Beijing Haidian Hospital, have an expected life span of two weeks or less.
With just six beds available for terminally ill patients, Qin has no option but to impose the time limit. “Some patients die while waiting for a bed,” she said, leafing through the pages of a notebook filled with patients’ names, phone numbers and details of their illnesses.
Despite the high demand for palliative care, there are only a few dedicated hospices in the country, and they are struggling to survive.
“That they do (survive) is a miracle,” Qin said.
Having worked as a cancer specialist for more than 30 years, she has witnessed many terminally ill patients die in the hospital while attached to tubes and drips, even though there is no medical reason for them to suffer.
Unlike intensive treatment given to terminally ill patients in the hope of prolonging life, palliative care uses just enough medication to alleviate pain so people can die in a gentle, dignified way.
Death is still a taboo subject in China, though, so to avoid discussing the topic some families pay for expensive treatment until the patient dies, despite them having no chance of recovery, according to Qin.
Cultural concerns about death run deep in China. For instance, most people try to avoid living on the fourth floor of a building because “four” in Chinese has a similar pronunciation to “death”.
People are always reluctant to discuss the subject.
For example, even as the condition of Zhao Zhe’s 78-year-old stepfather deteriorated, the old man was unaware he had late-stage liver cancer until he accidentally read a WeChat message on his wife’s phone.
“We were afraid depression would kill him first (if he learned about the diagnosis), but the disease killed him,” Zhao said.
Nobody wants to provide hospice care because it means investing energy while losing money.
Li Songtang,
‘Sense of mission’
Li Songtang, 69, founded the Beijing Songtang Care Hospital in 1987 because of the “sense of mission” he developed as a “barefoot doctor”, whose elementary training allowed him to provide basic medical treatment in isolated rural areas.
However, the hospice, one of China’s first end-of-life care centers, was forced to change location seven times in 16 years because of people’s unease about having such an institution near their homes.
Once, Li tried to relocate to a residential community, but locals surrounded the bus carrying the patients to prevent them from disembarking.
“It is a hospital of the dead. If we let them in we will never make a fortune,” one resident shouted.
It wasn’t until 2003 that the hospice found a permanent home outside the Fifth Ring Road, far from the downtown.
The mistrust even permeated Li’s family life, and in the early days his wife would not let him into their home after work unless she was sure he had taken a bath and changed his clothes because she believed he would bring bad luck.
Despite these age-old cultural inhibitions, demand for palliative care is growing as China’s population ages.
Last year, more than 240 million people were age 60 and older, accounting for about 17 percent of the population. Meanwhile, 9.86 million people died, about 19 every minute, according to the National Bureau of Statistics.
“Everyone dies. It is something that happens to us all,” Li said.
So far, more than 40,000 terminally ill patients have finished their life journey at Songtang. The hospice currently has about 300 patients, with ages ranging from a 2-month-old baby to centenarians.
Though national health regulations stipulate that the maximum time a person can stay in a hospice is 15 days, the average stay at Songtang is 56 days. “You can’t chase patients away if they are in a serious condition,” Li said.
Sometimes patients stay much longer than the permitted time. Wang Longfeng moved into Songtang more than six months ago after she was diagnosed with myeloma, a cancer of the plasma cells, and told she had three months to live.
“I’m too young to die. I must be strong,” the 65-year-old said, adding that she appreciates the sense of companionship at the hospice because she was lonely at home when her daughter went to work.
Lack of access
In 2015, the Economist Intelligence Unit, an advisory and research company in Britain, ranked China 71 out of 80 countries for quality of death. It noted that less than 1 percent of the population has access to palliative care and most of the facilities are concentrated in major cities.
Authorities are aware that demand for palliative care is rising rapidly.
In March last year, 13 hospice pilot projects were established by the Beijing government in accordance with central government guidelines.
The yearlong pilot was intended to explore the introduction of widespread palliative care, “but no directions for follow-up programs have been set out so far,” Qin said.
Both Qin and Li said it is essential that detailed standards for hospice care and financing are drawn up, because without government subsidies operating costs will become a major challenge for palliative care providers.
In China, health insurance is focused on curative treatment, so reimbursement is limited for patients reliant on palliative care.
Songtang does not qualify for the national medical insurance program.
That means patients have to pay the full cost of their stay, which ranges from 3,990 yuan to 7,470 yuan ($596 to $1,116) a month, depending on the number of patients in a ward, which is never more than eight.
To qualify for the insurance program, Li would have to upgrade the facility by purchasing expensive equipment.
“We can’t afford it,” he said. “Not to mention that it would be of no use at all.”
Psychological counseling is also an important element of palliative care. It is provided free of charge at the hospice, but there isn’t enough money to pay qualified professionals, so members of staff are trained to provide the service instead.
The nation’s outdated health policies are impeding the development of hospice facilities, according to Li.