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DIGNITY IN DYING

Hospice care is starting to end the traditional Chinese view that life must be prolonged at all costs, but lack of standards, funds and training means many patients do not receive the end-of-life care they want

By NewsChina Updated Oct.1

A nurse comforts a patient in hospice care at a community healthcare center in Ningbo, Zhejiang Province, December 18, 2018

Qin Yuan wrote three Chinese characters on a big whiteboard reading “nasogastric tube” and showed them to an elderly patient lying on a bed. The patient, Wang Li (pseudonym), quickly replied “no.” 

Wang was a patient in the hospice care ward of Beijing Haidian Hospital which admits those with late-stage cancer. Although his daughter pleaded with him, Wang was steadfast in his refusal of the feeding tube.  

Qin followed Wang’s wish. She feels that hospice care means helping patients leave the world in peace and with dignity. Adhering to a patient’s wishes is one of the major ways this end-of-life care is given. Different from ordinary medical treatment, hospice care, Qin said, values psychological comfort over physical treatment.  

It is still a new concept in China, since Chinese people traditionally decide to extend a sick relative’s life at any cost. 

In 2017, the Chinese government chose several hospitals nationwide, including Beijing Haidian Hospital, to pilot hospice care, but interviewees said that the popularity of the new concept depends on the medical resources allocated. It needs to be considered as a national institution and may require legislation to help people better understand what dignity in dying means.  

Patients’ Will
Qin says her department generally admits two categories of patients, those who are dying and those who want to stop treatment and move on to palliative care because they are in the late stages of cancer. There is no more chemotherapy and radiotherapy, but they will receive much more physiological care.  

“My communication with the patients and their families is 5-10 times that of the days before I transferred to the hospice care department,” Qin told NewsChina. “Each decision is made with full communication with patients and their families, and our final objective is to satisfy them, especially the patients,” she said.  

Due to China’s traditional views on death, many people are anxious when a family member is approaching death. They feel that they should try everything, including nasogastric tubes or drips with nutrient solutions, but Qin tells them this is not what hospice care means.  

“Hospice care is like doing subtraction,” she said. “We take away all unnecessary things on a patient [if they agree], such as a nasogastric tube, because these things will increase the physical burden on a patient at the late stage.”  

Qin said that Wang Li had refused life-prolonging treatments. Too weak to speak, he indicated his refusal by waving his head, and Qin followed his wishes until he died. In the end, Wang’s daughter expressed her gratitude to Qin for giving her father what he wanted, “a good death.” 

One time, a 92-year-old woman with cancer was admitted to the ward. She told Qin she was not afraid of death, but of the suffering caused by medical instruments and procedures. Her son did not follow her wishes and made Qin give his mother a drip, only to find that his mother pulled it out.  

That is why Qin emphasizes communication with patients and their families. “Everything should be discussed, sometimes in advance, because we have to ensure that the patient is fully heard and understood. That is hospice care,” she said.  

Views on Death
Qin takes some risks by soliciting and following a patient’s own wishes, since in traditional Chinese culture, it can look cold and cruel if a family fails to have a sick relative treated by any means available. The 92-year-old’s son told Qin that he worried he would be criticized by other relatives for neglecting his mother if he did not do something to extend her life.  

To alleviate his worries, Qin helped his mother make a video to say it was her choice to stop all treatments, which was posted to the family chat group.  

As death is a taboo subject in Chinese culture and few Chinese people, especially older generations, are formally educated about life and death, a crucial part of Qin and her colleagues’ work is to verify if a patient and their family have correctly understood what hospice care is. 

“Many patients have been lied to about the true seriousness of their condition and that there are still many treatments available. If we admit such patients, they might believe their family has abandoned them. It can cause a lot of hurt,” Qin said. “So the first support we give to families is how to tell the truth to the patient while minimizing the psychological harm.”  

“Some families are so stubborn that they insist on what they believe is best for the patient, regardless of the doctors’ suggestions and the patients’ own wishes. These patients are not suitable for hospice care, since those whose wishes are not followed would die in misery. This in turn imposes a heavy burden on the hospice care team,” one of Qin’s colleagues, who refused to reveal her name, told NewsChina.  

“Hospice care is very hard work and the medical team would collapse without support from the patient’s families,” she added.  

Medical workers are pleased that more and more people have changed their views on death. Sun Wenxi, head nurse at the hospice care department of Shougang Hospital, Peking University, another hospice pilot area in Beijing, told NewsChina that when the department opened in 2017, most of the patients and their families just regarded it as an another way to secure a hospital bed, which is a scarce resource in the capital. But now more families have a clear understanding of hospice care, telling doctors that they hope it will ease the patient’s pain rather than extend their life. 

A nurse cares for a 104-year-old patient at a hospital in Qingdao, Shandong Province, April 20, 2018

Short of Resources
While awareness is increasing, there are not enough medical resources to support the need. Sun Wenxi told NewsChina that hospice care should target eight categories of patients, including those suffering from late-stage cancer and serious heart or lung failure, but a lack of funding and specialist medical staff mean that most Chinese hospices can only care for cancer patients. 

China Comment, a magazine published by the Xinhua News Agency, cited a 2015 survey by the Chinese Association for Life Care which showed that although China has piloted hospice care since 1988, by 2015, the country only had around 200 hospitals or other medical facilities that provide hospice care, far below the rising demand. According to the report, China’s hospice care covers 10 percent of those with late-stage cancer. The average in developed countries and regions is 80 percent.  

Qin said he once visited a hospice in Taiwan and was told that the bed/nurse ratio should reach 1:1, while on the Chinese mainland, many hospice care wards have to share nurses with other departments.  

A bigger obstacle is that hospice care is not covered by social medical insurance. Although the costs of prescribed drugs is low, patients need more mental care, but this is hard to define as a cost.  

In a 2019 interview with The Beijing News, Wang Delin, director of the cancer department at Shougang Hospital, said that based on the same number of patients, the revenue of the hospice care department was only one-third of that of the cancer department, and the hospital has to make up the difference. 

Qin told NewsChina that her salary has dropped 25 percent since she transferred to the hospice department. 

“Hospice wards on the Chinese mainland don’t make money and staff work there out of compassion. But this situation makes it very hard to employ more people and provide more wards for hospice care,” Wang said. 

To increase revenues for hospice wards, some cities are adding some of the services provided to the social medical insurance, while also trying to fix the daily charges based on different levels and categories of service. Shi Baoxin, deputy director of the Chinese Association for Life Care, said he worries that a package charge like that will increase the financial burden for patients, but the quality of the care will not improve.  

“Patients suffering from different diseases need different kinds of service and it’s hard to work out a unified charge,” he said. “Actually, I don’t think it is practical to fully depend on the government. Hospice care needs huge amounts of money and resources and we can’t do it well without volunteer groups and NGOs, such as foundations,” he said.  

Standards and Legislation
Like Shi, many other interviewees care more about the quality, since China has not yet set up a national system for hospice care, including staff training and appraisal, which has prevented many hospitals from providing a high-quality service. 

In Shanghai, government encouragement has promoted more community hospitals to offer hospice care. Yet compared to top hospitals, community ones are less experienced in controlling symptoms and relieving pain, and they cannot supply all the necessary medications. Many medical workers at lower-level hospitals do not understand the concept of giving patients a dignified death, nor how to offer it.  

“We [the mainland] don’t even have official materials for hospice care training,” Shi said. “As far as I know, some hospitals send medical workers and volunteers to Taiwan and Hong Kong for training,” he said.  

Qin thinks legislation is the best route. She said that a law for hospice care can clarify the rights and obligations of patients and medical workers, especially when a patient has different wishes at different stages or when the family has disputes with doctors over care. 

“Legislation is necessary to solve disputes and moreover, express the government’s support for hospice care. It would encourage more families to send patients to hospice care wards and disregard the possible objections from other relatives,” she said.  

Qin’s view is supported by Shen Deyong, former standing deputy president of China’s Supreme People’s Court. “We need a national law to explain what dignity of life means. It should be the essential focus of hospice care,” he told NewsChina. 

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