LIFE OR DEATH DECISION
Since founding Beijing Songtang Hospice in 1987, Li Wei has had to change premises seven times, four times due to violent protests from the neighbors. “They would say we were bringing a curse to the community. They called us
‘the last stop before Babaoshan,’” Li tells TWOC, alluding to the famous Beijing cemetery.
Now located off a remote suburban expressway, the mainland’s oldest palliative care facility sees steady demand for its 200 beds, as an aging society prompts the government to encourage the development of nursing homes, as well as hospital departments for palliative care, or linzhong guanhuai (literally, “end-of-life care”). Still, “China has no linzhong guanhuai culture; 95 percent of elderly in the countryside die at home,” Li estimates.
Even in the cities, according to Li, 60 to 70 percent of elderly pass away in their own or their children’s homes, with at most a nanny to relieve their physical discomforts. Other terminal patients in China are kept alive in intensive care units (ICUS), while public hospitals are often stretched too tight to accommodate most patients beyond 10 days after an operation.
Only a minority of elderly or terminal patients is able to access hospice care, and most have never even heard of it; by contrast, nearly half of all deaths in the US occur within a hospice program, according to the National Hospice and Palliative Care Organization.
The notion of palliative care was not even introduced to China until the 1980s, partly because the notion of improving one’s “end of life” quality, instead of focusing on a cure, was culturally anathema. Chinese medicine may be a culture unto itself, but the notion of death remains stubbornly off-limits.
Superstitions surround even words that sound like “death,” with phone and apartment numbers that contain the unlucky number four being particularly unpopular. Just to acknowledge one’s own demise, such as by registering as an organ donor,
is seen as a form of bad luck that can supposedly affect everyone in the vicinity, as demonstrated by Beijing Songtang’s earlier unpopularity.
Similar anti-hospice protests have occurred in Shanghai and Hangzhou. “No morgue in the community” read a banner lifted by fearful Shanghai protestors in 2014, after rumors emerged that a palliative care institute would be established in the neighborhood. Guo Xu, a 14-year-old volunteer at Beijing Songtang, recalled that her family originally objected to her extracurricular activity. “When I first visited Songtang last October,” she told TWOC, “my parents worried I might be frightened, because patients there could die at any moment.”
That’s not an entirely irrational concern, Li concedes. Over the last 32 years, Songtang has overseen the deaths of 40,000 patients, or about three a day. Most of the hospice’s residents are over 80. Some have just three to six months left to live, while some others are physically or mentally incapacitated, or have no families to take care of them.
The Confucian virtue of filial piety is another stumbling block. Although the sage himself rarely addressed the afterlife in his writings—except to ask “If you don’t understand what life is, how will you understand death?”—it’s considered every child’s duty to look after their parents, particularly in old age. Choosing palliative care is considered tantamount to abandoning one’s parents, or giving up.
This attitude can often result in families insisting that doctors pursue aggressive treatments to maintain the lives of terminally ill relatives, rather than focusing on their loved one’s psychological and spiritual needs. Many view resources like Songtang as an alternative only if they cannot afford the cost of an ICU, explains Li.
Although patients receiving hospice care are generally not expected to live longer than six months, “this standard is hardly practical,” as Tian Zhijun, vice-president of Beijing Longfu Hospital, told China Youth Daily in 2017. Those with non-fatal diseases like Alzheimer’s, or who have suffered a stroke, can often survive for a long time, but may still require the care that only a hospice can properly provide.
The need for hospices is a growing one. The number of those aged over 60 has risen from 194 million in 2012 to over 231 million, or 16.7 percent of population, in 2016, according to China’s National Bureau of Statistics. Meanwhile, statistics released by the National Cancer Center (NCC) this January showed that close to 60 percent of the 3.93 million new cases of cancer diagnosed in 2015 proved terminal, mostly in patients in their 60s and 70s; as many as 30 percent could suffer unbearable pain, says the NCC. Over the last decade, China’s overall rates of morbidity and mortality rates have both annually increased by 3.9 and 2.5 percent, respectively.
This should come as no surprise to most medical practitioners. As early as 2009, the book Research on Urban Hospice Care Services and Policies in
China estimated that more than 7.5 million Chinese would requite some form of hospice care. The supply of such services, however, has lagged far behind.
Almost all hospices in China are in first and second-tier cities like Shanghai, Beijing, and Chengdu, according to the Economist Intelligence Unit’s 2015 Quality of Death Index. Out of a total of 80 countries and regions, Chinese mainland was ranked at 71, scoring 23.3 out of 100 for its palliative and healthcare environment, human resources, quality of care, and community engagement; only its affordability compared positively against the global average, with a score of 37.
Shanghai, considered one of the best places for hospice care in China, only offered 234 hospital beds across 84 linzhong wards in 2013, even though the city saw 116,700 deaths, including 367,000 from cancer, that year, the
to three or four patients around the clock, with duties including washing, feeding, and changing diapers, as well as chatting with his patients and putting on impromptu song-and-dance routines for their mental well-being. No well-educated or city workers would do the job, Ouyang maintains, and most caregivers come from poor mountainous areas such as in Hunan or Sichuan provinces.
It’s 60 percent psychological support, director Li says of hospice work, and 40 percent medical needs and nursing. There’s a responsibility to relieve the loneliness, anger, and fear of death that many patients suffer, Li adds, that makes the absence of spiritual sustenance for most patients a challenge for the field of psychological service in China.
After noticing high suicidal tendencies