Would you want to know if you were terminally ill?

The good news is that attitudes towards hospice care have changed considerably in the past decade

QUALITY OF LIFE in China has soared in recent decades. The quality of death, however, remains grim. As the population ages, the number succumbing to diseases that can be protracted and painful, such as cancer and Alzheimer’s, is soaring. The government wants to make dying a bit less execrable, so it is experimenting with state-subsidised end-of-life care. But deep taboos and bureaucratic hurdles are making progress agonisingly slow.

International rankings confirm that China is one of the worst places to die. A study in 2015 by the Economist Intelligence Unit (EIU), a sister organisation of this newspaper, placed China 71st out of 80 countries for the quality of palliative care.(Pixabay)

International rankings confirm that China is one of the worst places to die. A study in 2015 by the Economist Intelligence Unit (EIU), a sister organisation of this newspaper, placed China 71st out of 80 countries for the quality of palliative care. Another international study, published by the Journal of Pain and Symptom Management, ranked China 53rd in its comparison of end-of-life care in 81 countries (Britain was top; America came in 43rd).

Chinese hospitals often do not allow patients to occupy beds simply to receive palliative care. Even at one of Beijing’s top hospitals (which does), only one-third of the patients who need such help can get it, a doctor told state media last year. Separate institutions for the dying are scant, too. For a terminally ill patient, there are often only two options: persist with hospital treatment that is expensive and ineffective, or die at home without ready access to powerful painkillers or help from well-trained nurses.

Taboos that limit discussion of death make all this harder to fix. It is common for doctors not to tell patients when they are terminally ill. Family members get told first—and they themselves sometimes decline to pass on the bad news. This can make it difficult to move someone to a hospice bed, even when one is available. Chinese tradition emphasises the importance of filial duty. People feel they are failing their parents if they give up on attempts to stop them dying. “We knew that treatment was pointless, but I covered it up and took her to Shanghai for surgery,” writes one woman on social media, about her mother’s cancer. “In the end, it was nothing but pain and disappointment.”

Efforts to set up dedicated hospices have sometimes faced opposition from neighbours fearful of living near a place linked with death. Li Wei, the founder of Songtang Hospice—a rare private institution in Beijing—recalls ordeals he faced after setting it up in 1987. The facility used rented property and had to move several times because landlords wanted to redevelop it. On one occasion occupants of an apartment complex gathered to stop the hospice moving in. Dozens of patients were left stranded outdoors in the summer heat with equipment piled around them.

Going gently

The good news is that attitudes towards hospice care have changed considerably in the past decade. Instead of lashing out as they usually do when China is criticised abroad, state media accepted the findings of the EIU’s big study. In 2016 hospice care was mentioned for the first time in a major health-related policy document issued by the central government. In its outline of goals for 2030, it said the building of hospice facilities should be “stepped up”. The following year China launched experiments in several cities. They include requiring health authorities to provide hospice beds in hospitals and offer palliative care at home.

Shanghai took the lead: by 2020 community health centres in every district were providing inpatient or home-based hospice care. Last year Beijing achieved the same. Between 2018 and the end of 2022, the number of hospice units in Chinese hospitals increased 15-fold to more than 4,200.

Yet the number of beds for palliative care remains “a drop in the bucket when considering the annual tens of millions of deaths in China”, noted Yicai, a news service, last year. Although some of the pilot schemes help patients by allowing some hospice treatment to be claimed on insurance, the biggest cost in palliative care—nursing—is not usually covered. And there is little real incentive, beyond government pressure, for underfunded hospitals to provide these services: peddling more expensive treatments is better for their bottom lines. In other rich countries hospice networks rely heavily on charitable donations. But these are far less available in China, not least because the party is wary of letting civil society flourish.

Another problem with the pilot schemes is that they do not tackle a glaring unfairness in China’s health-care system. When using urban medical services, many migrants from the countryside (there are about 300m such people) have to pay a far higher proportion of their expenses out of pocket than they would if they received the same treatment in their hometowns. And hospice wards are mostly in big cities.

It will not get easier. As China’s property market falters, one of the main sources of revenue for local governments—land sales—is drying up. It is no coincidence that the biggest progress towards rolling out hospice care is being made in the richest parts of the country. Poorer ones have little incentive to launch new public services that are not self-sustaining financially. In addition to providing beds, hospitals would have to devote considerable resources to training staff in what for most would be an unfamiliar area of expertise. In most of China a dignified, comfortable death will remain a luxury that only the rich can afford.

Subscribers can sign up to Drum Tower, our new weekly newsletter, to understand what the world makes of China—and what China makes of the world.