That makes it tough to provide good of end-of-life care
WHEN Li Songtang was 17, officials overseeing Mao’s chaotic Cultural Revolution sent him from Beijing to Inner Mongolia, a northern province where he became a “barefoot doctor”—a medical worker with rudimentary training. His patients included an academic whom the government had expelled in disgrace from the capital, and who had become terminally ill. The patient grew sicker and increasingly troubled by his political black mark. Unable to console him, Mr Li eventually lied that he had persuaded authorities to wipe the slate clean. The patient grabbed his arm with relief and gratitude, recalls Mr Li. “I can still feel it today.”
Mr Li’s experience of caring for the dying man eventually resulted in the hospice he runs in a three-storey building in Beijing’s outskirts. The facility is home to about 300 people, most of them elderly and with late-stage cancer (a patient there is pictured with a nurse). On a weekend the bright corridors are busy with volunteers who have come to chat with patients. Zhang Zhen’e, a smiley 76-year-old who shares her room with six other women, says she tries to stay cheerful because days spent worrying are “days lost”. A nearby ward for dying babies, painted green and decorated with mobiles, is less easy to visit. Eight children snooze there, asleep in mismatched wooden cots.
Founded in the 1980s and bearing his name, Mr Li’s Songtang Hospice was one of China’s first end-of-life care centres. There are still far from enough of them. In 2015 the Economist Intelligence Unit, a sister-firm of this newspaper, ranked support provided to the dying in 80 countries. It placed China 71st, noting that specialised end-of-life care was available to less than 1% of its population and only in the biggest cities. Yet demand is growing as China ages and a growing number of its elderly people suffer from drawn-out diseases (the annual number of cancer diagnoses has doubled since 2000). Younger people, many of whom have no siblings, are often too stretched to provide care for those for whom cure is impossible. Few countries face so wide a gap between the need for hospices and their supply (see chart).
One reason for the lack of care facilities is that cash-strapped hospitals have strong incentives not to create hospice wards, given that palliative treatments create much less revenue per patient than expensive curative ones. Some health workers think the best hospitals have an ethical duty to reserve their limited resources for people who have a chance of getting better.
Cultural inhibitions also impede the development of end-of-life care. Talking about death has long been taboo. People often feel that it is their filial duty to ensure that sick parents receive curative treatment, even when doctors advise that there is no chance of recovery and the treatment will be painful. Applications to build hospices are sometimes challenged by local residents who resent the presence of death on their doorsteps. Mr Li says neighbours’ objections have forced Songtang Hospice to move six times.
A tendency to hide grave diagnoses from sick relatives may make some families reluctant to move patients into care that is clearly aimed at easing the pain of dying. Such covering up is widely considered to be a kindness, even though it deprives patients of the ability to choose for themselves how they wish to spend their remaining time alive. A few years ago, the mother-in-law of Zhang Li (who asked that, to spare her family, her real name not be used) was diagnosed with terminal bladder cancer. The sick woman’s relatives agreed to keep quiet about the diagnosis. They hoped that doing so would make her final months as carefree as possible. Learning the truth might have killed the patient, says Ms Zhang: “She would probably have died of depression, not the disease.”
In some cases it is the healthy who are kept in the dark. Wang Ying of Hand in Hand, a charity that tries to encourage more open discussion of death, says she has heard of orphaned children being told by grandparents that their parents are not dead but on holiday. Her charity organises casual gatherings, called “death cafés”, at which the young and healthy are encouraged to have frank discussions about their inevitable demise.
The government is eager to improve the country’s dismal ranking in the provision of care. Last year it released guidelines on hospice treatment that it hopes will encourage more of it. The authorities later launched trials of new hospice wards in five cities, including Beijing and Shanghai. They also want to promote hospice treatment that is supervised by community clinics, including at home.
In theory, hospice care should help save money that is spent on costly and ineffective “cures”. China’s national health-insurance system caps reimbursements, so patients sometimes have to pay a lot to have serious chronic illnesses treated. But the insurance scheme deters families from considering hospice care for their dying relatives. It only covers such care at a few approved facilities (not including the Songtang Hospice), and even then does not cover the full cost. The government’s efforts to improve the regulation of hospice-care providers should eventually allow many more of them to be funded through national insurance.
Luo Jilan of the China Life Care Association, a research and awareness-raising outfit, is optimistic. She says that doctors and nurses are gaining expertise in palliative care, that powerful painkillers are becoming more readily accessible and that officials have become more understanding of dying patients’ spiritual needs (the officially atheist Communist Party is wary of religious activities, especially outside registered places of worship). But changing the attitudes of patients and their families will be tough. Mr Li of the Songtang Hospice says that, even when they are admitted to his facility, some people are unaware of the severity of their conditions. He says he and his staff try to help families who want to hide the truth from the dying.
Since 2013 an NGO in Beijing, the Living Will Promotion Association, has been encouraging people to decide in advance how they wish to be treated at the end of their lives. But relatives and doctors sometimes ignore such instructions. Shi Baoxin, a doctor at a medical university in the port city of Tianjin, says that education about dying should begin at primary school to help people gain a “reasonable and scientific” understanding of it in later life. Change will take time but some people, at least, are beginning to call for it.