Patients must wait for hospice care

A volunteer takes care of a patient at the hospice ward in the Beijing Chaoyang Hospital. Wang Yixuan / For China Daily

Only one large hospital in Beijing runs a ward for terminal patients

For the past year, 82-year-old Li Jing, who has end-stage rectal cancer, has been lying in a ward at the Beijing Geriatric Hospital, her body connected to several different plastic tubes, unable to make the slightest move.

Her upper body lies flat, her eyes watching through her glasses, but her left leg is curled and slightly angled, unable to stretch out, pitching the blanket covering her knee like a small tent.

Li, whose name has been changed to protect her privacy, is fed five times a day. Her nurse prepares the food, vegetables and eggs, in a blender and the fluid is directed to her stomach through a soft tube connected at her nose.

"She cannot speak, but she can hear and understand my instructions," said Wang Jinyan, Li's nurse at the hospital's hospice department.

"She used to be a professor at a top foreign language university in Beijing," Wang said. "She gets nervous easily. She gets scared even when we try to turn her body gently to clean her back."

Besides Li, another 27 people, most of them older than 80, are patients in the hospice ward, Wang said. Some are in extremely poor health condition and are on life-support.

The patients receive conservative treatment to relieve pain, which is aimed at helping them live their final days in a relatively peaceful way.

"All of them are critically ill, suffering diseases such as end-stage cancers, brain hemorrhage and heart failure, and were sent here by their families from their homes or from ICUs after their conditions stabilized," head nurse Zhao Bingyun said.

"Their families who sent them here would not want them to receive invasive end-of-life treatment and they hope they can spend the rest of their lives with a little more dignity," Zhao said.

Shortage of services

Since the hospital's hospice department was created in 2010, only a handful of seniors receiving care have recovered and returned home, Wang said.

"But they are miracles," she said. "Most of the patients die in the hospital."

The hospice ward is the only one of its kind at a large Beijing hospital and every bed is occupied. The hospital is planning to add more such hospice wards, and the number of hospice care beds is expected to increase to about 50 in the near future, said Yang Yingna, a hospital publicity official.

"Families of patients have to reserve a bed months ahead," Zhao said. "And the people sent here are becoming older and older."

Ma Yanming, an official at the Beijing Municipal Commission of Health and Family Planning, the city's top health authority, said hospice care has been a thorny issue for years, and the provision of better hospice care is becoming more urgent due to rapid aging in the city.

"It is difficult for many other hospitals to open hospice departments," he said. "A few years ago, we planned to set up hospice care in more big hospitals, but many hospitals are reluctant to do so."

Ma said there are many reasons for the lack of hospice care in big hospitals, including higher costs due to more intensive care, resulting in lower profits for hospitals.

"A normal patient stays in the hospital for just a few days," he said. "But an end-of-life patient can stay in the hospital for months or more than a year."

Lack of nurses

According to Zhao, the head nurse at the Beijing Geriatric Hospital, it is impossible to accommodate all the elderly patients facing serious diseases in hospitals.

Many hospitals are already overcrowded with regular patients, and most nursing homes will not accept patients because they lack professional staff and necessary equipment.

"For the Chinese, home is the best place for seniors at the end of their lives, if they don't want to receive unnecessary intrusive treatment, which might extend their life for a few hours," she said.

"Actually, most patients staying in these wards prefer the company of their family members and get care at home," she said.

"But most people lack a basic knowledge of senior care, and when elderly patients are sent to the hospital it is usually too late."

Li, for example, was in a fragile condition when she arrived and with skin ulcers. Nurses applied medicine to the damaged skin, cleaned her every day and turned her body every few hours, helping her to recover.

"The skin ulcer developed when she was at home due to lack of professional care," Zhao said. "We urgently need to train more professional nurses for hospice care, so they can take care of the elders at home instead of at hospitals."

Wang, Li's nurse, said Li's husband and son come to the hospital to see her once or twice a week.

"She cannot speak or move, even display any facial expressions," Wang said.

"But she always stares into her son's eyes when he visits her."

Ma, from the health commission, said the city plans to take more measures to encourage less-crowded grassroots hospitals, especially those in residential communities, to provide hospice care.

"The key lies in medical reform to improve the quality of service in grassroots hospitals and clinics so they can become more attractive to patients," he said.

Expensive hospice care

According to Zhao, high costs have prevented many patients from seeking hospital hospice care.

In the hospital's hospice care department, patients pay 300,000 yuan ($47,000) or more a year for care, including medical bills and nursing costs, although some have part or all of their bills reimbursed through insurance, she said. "Most of the patients here are from well-off families," she said.

Yang, the publicity official, said a lack of insurance is a major reason nursing homes have been discouraged from providing hospice services. Without insurance, such care is unaffordable for most families, but it is not available from the government.

wangxiaodong@chinadaily.com.cn